Jessica was 11 when the persistent pain in her stomach led her to be diagnosed with Crohn’s disease. She told us how Crohn’s changed her life and what living with it for 17 years has been like.
“Pain changes you as a person.”
Q: Hi Jessica, welcome to LUCK-IT! To start, could you tell us a little about yourself?
A: Thank you! I am excited to do this interview with you. My name is Jessica, I am currently 38, living in Ohio with my cat, Tuna and my husband.
How did you find out you had Crohn’s disease? What were the signs that led you to discovering so?
I was 11 years old at the time having severe stomach pains, really gassy and bloated. It was so painful to eat anything and I was living in the bathroom. One night I was at the dinner table trying to eat and I doubled over in pain and my dad rushed me to the hospital.
For the benefit of those who don’t know, could you explain what Crohn’s Disease is?
Crohn’s Disease is a chronic inflammatory bowel disease that affects the body. It can affect anywhere from your mouth all the way through your body. It’s an Autoimmune Disease where your body attacks itself. Crohn’s disease can sometimes cause life-threatening complications. Treatment can help, but this condition can’t be cured. Crohn’s disease can cause abdominal pain, diarrhea, weight loss, anemia, and fatigue, with much more. Some people can go into remission, while others can have severe chronic symptoms that never go away.
What treatments did you receive right after diagnosis and how did those help you?
It took the hospitals a full year of testing before they could fully diagnose me. They did bloodwork, Cat Scans, M.R.I.’S, Colonoscopies, Endoscopy, and started me on a steroid called Prednisone. The steroid at the time was the only drug that was slowing down the bleeding going on in my insides.
“Taken in 2010, right before my first major Crohn’s surgery where they took out my whole colon and large intestines.”
What other symptoms remained after your initial treatments and how have you been dealing with those?
Once you are diagnosed your symptoms remain unless the medication your on works or you go into remission. I still have stomach pains, nausea, pain after eating, nights where I am up all night in the bathroom. It’s very exhausting to deal with. Music has been a huge help in dealing with the stress of it all.
From your experience what types of diets and lifestyles work best for someone with Crohn’s? And which ones are the worst?
Everyone with Crohn’s is different, but in my experience I have to have a strict diet of nothing spicy, no raw vegetables, no harsh meats like ribs. A soft food based diet works best for me. The worst is popcorn, nuts, and anything spicy.
Which 3 objects or people are most useful for you when dealing with Crohn’s flare ups?
I can not stress this enough, a heating pad and any kind of heating pad is a life saver! Hot showers, and lots of bed rest. The less stress you have in your life is better cause stress causes flare ups.
Which place was most useful?
Any place that relaxes you is your most useful.
Do you think you will ever be able to eliminate Crohn’s disease from your life? Why or why not?
You can do your best to maintain your symptoms and try to go into remission but Crohn’s disease can always come back. I went into remission for 9 years after a j-pouch surgery. Now the disease has come back and it’s started all over again.
“Me during remission in 2015.”
What did you learn from having Crohn’s that you didn’t know before? How did you change as a person?
Getting it at such a young age I had to grow up before my time, I felt my teenage years were stolen from me so to speak living in the hospital. I learned compassion for others who go through sickness and pain changes you as a person.
If you could go back and replay your time before developing Crohn’s all over again, what would you do differently?
I wouldn’t have changed a thing. I was 11, on a softball team, was able to go to school, was able to play outside and be a kid. Getting Crohn’s I had to quit it all and go on homeschooling.
What advice do you have for those who are presently coping with Crohn’s disease too? And what advice do you have for their family and friends?
You will get through it even when you feel like you won’t. It’s okay to feel mad and cry and have sick days and it’s not your fault. For friends and family, please don’t push, we know our bodies, just be our support.
Lastly, how are you doing these days?
Thank you so much for asking! Since getting Crohn’s, the disease has caused 6 other illnesses, and I have beat colon cancer. I am doing okay.
Jessica hopes to lose 60lbs this year and has joined a weight loss program for that. You can connect with her on Facebook, Instagram, Twitter or tell her your own stories using the comment box below.
More interviews with people who’ve been through life’s challenges here.
Photograph copyright of Jessica. Interviewer: Sy Want to be featured too? Tell us here. If you found this article useful:
7 years ago, Caren Robinson got into a car to pick her daughters up from a sleepover and soon after got into an accident that left her with polytrauma and traumatic brain injury. We asked her how she recovered and what the process was like.
“I have learned what it means to be disabled and to live with disabilities; how the world is not fully prepared to accommodate or understand people with certain disabilities.”
Q: Hi Caren, thanks for being here to share your experience with us today! To start, could you tell us a little about yourself and how you ended up in that traffic accident that changed your life?
A: Thank you, Sara, for having me here. I am a Certified Holistic Life Career and Executive Coach; a co-host on a Brain Injury Radio show, and I am the founder of an educational website bringing awareness to Polytrauma and Brain Injury for the HOPE’sters of the world.
I really appreciate you reaching out to me about my story. This story is regarding an event that changed the trajectory of my life without warning. That question about how I ended up in the traffic accident remains a mystery to some degree as I have no recollection of the wreck at all. That used to bother me the first few years… trying to piece everything back together; trying to remember how I ended up in a head on collision; why my
seatbelt failed, and I was ejected; how and why I survived such a
catastrophic event, and why I couldn’t remember anything about any of it. It seemed like a complete dream, but the pain was very real.
What injuries did you sustain as a result of your accident and how did it change your body hence on?
I had a plethora of injuries. I sustained a Polytrauma (injuries that affect more than one system of the body) and a Traumatic Brain Injury. The Polytrauma consisted of multiple soft tissue injuries, multiple Orthopedic fractures in my R wrist, R ribs, pelvis, spine, a shattered scapula and a bum left knee. The brain injury resulted in neuroendocrine changes, short and long term memory loss, cognitive changes, hypersomnia, insomnia… well changes to my sleep overall; and a neurogenic bladder among a laundry list of other things which still continue to reveal themselves as time goes on.
Everything about my body was different. Literally everything changed.
What were your thoughts when you first came to at the hospital? How did you think it would affect your life?
The first memory I have at the hospital is waking up to a silver metal Triangle hanging above me. The events I describe remembering, my family has told me was about a week after I had already been in the hospital. I didn’t know where I was at or why. None of it made sense. I was in so much pain and apparently the medical staff was unable to get my pain under control… even with an epidural and being heavily medicated.
I don’t think I had a concept of how it would affect my life at that point because I still didn’t have a full understanding about what had happened to me.
Caren’s back after the accident.
How did the accident really affect your life in the end? How long did it take you to recover from your injuries and what did you have to do to get better?
Wow, that first question is a tough one. I could easily get lost in dark thoughts on that one; that is something I fight against continually… that rabbit hole that rears its head and tries to pull me down into that dark vortex about how much I have lost.
However, I guess I would have to say that this experience has afforded me the blessing of believing in miracles and the wonder of humanity; it has provided me opportunities I would not
have been able to experience had it not been for the recovery process itself; it has helped me to look at gratitude for life in a deeper personal way than I did before; advocate for myself in different ways than before; meet amazing people; experience medical miracles, medical injustices, and still hold onto HOPE as my distinct path to my lifeline.
There are some injuries that will be lifelong. I still have a nonunion fracture at T6 in my spine that the specialists have told me cannot be repaired. I also have some herniations, bulges, and stenosis I deal with. Chronic pain and I have an intimate relationship and I don’t get around as well as I used to. However, I am grateful to still be able to do things independently again.
To get better I had to believe in myself and what I knew about myself and not get caught up in ignorance from those who were not actually in my body. I had to be committed to the recovery process with physical, occupational, recreational, speech, and pool therapies.
I have benefited from counseling that involved CBT and Mindfulness focused care with someone that was experienced with dealing with complex medical traumas and PTSD. I have had to research my injuries and seek out qualified medical care to address a multitude of treatments, tests, and be willing to explore unconventional and alternative treatment plans as well. I have had to stay loyal to the strategies that I learned from my speech therapists, and advocate fiercely for myself, and continue to educate myself.
I have maintained a Blog about my experiences and sought to help others tell their stories as well. I essentially began a trek to reinvent myself with HOPE and Faith being the driving factors, along with my stubborn desire to LIVE and never give up.
Caren after surgery after the accident.
What was your routine while you were trying to heal from your injuries and what is your routine like today?
Apparently, initially my routine included asking the same questions over and over about what happened to me and where I was. Each time I woke up I asked the same questions for a few weeks. It involved 3 months in a Level 1 Trauma Center, then Neuro-Rehab Center, and massive amounts of therapy, and insurmountable pain. I slept a LOT. I could hardly stay awake. That later would turn to insomnia and then become a crazy mix of the two. I had to learn everything again: walking, bathing, self-care, toileting, eating, and managing my pain. The routine involved lots of medications, mostly for pain, uncontrollable muscle spasms, and being bedridden. It involved multiple reconstructive surgeries, of my ribs, R shoulder and several broken teeth repairs. My routine was to heal and accept that I had to let others care for my body because I wasn’t able to at the time.
The routine today involves managing my spoons. If you get the chance… Google “The Spoon Theory”. This was the best way I could describe how I felt to my family and friends about my new lack of energy and how I had to manage it. I am still involved with counseling, though have plateaued a bit on all the different specialists needed. My routine involves a lot less medications, a mindset to accomplish as much as possible with the spoons I have for the day. It involves being more independent than the year before, learning new things, keeping up on medical discoveries around my injuries, being the best mom that I can to my kids, cherishing the relationship I have with my husband, and finding a way to add value to the world despite the limitations of my physical body while pacing myself.
How long did it take you to get over the shock of sustaining traumatic brain injury and polytrauma? What helped you get over it?
I don’t think that this is something you ever “get over the shock of”. The shock comes in waves and becomes less constant as time goes on, yet still remains in the shadows. You just learn to adapt and radically accept the new normal and learn to focus your energy on moving forward with your life.
Healing continues. I still deal with emotional upheavals and endocrine challenges. Cognitively, I truly believe new neuropathways are still forming. I see this in the way I am able to perform with what I am able to accomplish in some things I wasn’t able to do, even 3 years ago. This keeps me hopeful. Yet there are challenges and hurdles that are still there to keep me humble and mindful of the realities I now embrace as a part of this new life. My memory and processing speed is still a challenge to keep on top of, yet I have enough tools to help me keep this mostly managed.
I don’t think I am “over it” as much as I continue to adapt to it. I get whispers of normalcy some days and other days I just can’t seem to get out of bed. Most days I end up pushing myself to accomplish because I have a life to live, responsibilities, and goals for myself. Other times I get overwhelmed and flooded and combating with the fatigue can feel like digging a hold in water. It helps to take baby steps. Baby steps lead to baby steps, which lead to having a purpose. Having a focus, a purpose, a calling is imperative to being able to get from day to day and moment to moment.
Which 3 objects or people were most useful when you were trying to recover from your injuries?
My family would have to count as one because it was truly a team effort between my husband, my mom, my nephew, and my kids.
The second item or object would have to be a purple blanket my brother got me while I was in the hospital. I kind of see it as my good luck charm. I have taken it with me to literally every surgery or major medical appointment; I have had and use it on road trips still to this day to make me feel safe and help keep me calm.
The final thing is an object – the word HOPE. Fixating on HOPE has gotten me through, and still remains a focus of importance for me.
Caren during Neuro-Rehab.
Which place was most useful?
Being able to be home was the most useful. Even though I was in a hospital bed at home, I had 24-hour care from people who really loved me and helped me stay focused on the end result, with time to heal. They bathed me, dressed me, cared for me in literally every way. It is the place I feel the safest.
What setbacks did you have along your journey of recovery and how did you move past those?
Wow. Too many setbacks to count. I know there were many that happened while I was inpatient that I don’t even remember. My family tells me about those. I almost died more than once. A lot of touch and go. The parts I do remember though as the biggest setbacks, was fighting with insurance and dealing with dishonest insurance agents who misrepresented the facts, options, and what our rights were.
Other setbacks included whack healthcare providers with tunnel vision, lack of proper follow through on my injuries, missing diagnosing injuries properly, not having the knowledge to help me with my particular injuries, and delayed treatment.
I moved past these setbacks with sheer determination, lots of emotional meltdowns, immense pain and physical decompensation, loss of body functions, and determination to not accept no as an answer to getting fixed. Finding providers who actually listened and believed me.
We were persistent with educating ourselves about the no-fault laws and our rights; advocating for myself, researching my injuries and getting in contact with amazing healthcare providers and amazing surgeons who actually cared about their patients. I learned to use my voice and speak up for myself. I learned to trust my body and what it was telling me. My family and I took copious notes and kept track of everything since I couldn’t completely depend on my memory. Eventually we ended up having to utilize the services of an Attorney and a Medical Case Manager (that we picked out) – which I highly recommend by the way.
There were so many people that have helped me move past the hardest parts. My counselors, Primary Care Physicians willing to advocate for me; a strong medical support team; and the love of my family and sacrifice of their time for sure.
The turning point of a lot of my physical recovery processes were when I got my ribs plated with Titanium and 40 locking screws in 2014 (10 months after the wreck) at Spectrum Health in Michigan.
Then, after much delay we met Dr. Peter Cole with Regions Hospital in MN. Dr. Cole did 3 of my reconstructive surgeries in 2016 utilizing stainless steel plates, screws, and cadaver compound – a truly fascinating process. I had gone 2 years with a shattered scapula and losing function in my right arm. I also ended up having a fractured Acromion plated as well. He gifted me back the use of my right shoulder and arm with his skills. I will be forever grateful to him and his trauma team. I would also like to add that he had an amazing bedside manner as well… as did his whole team.
Another turning point was with vision therapy and prism glasses from a Neuro-Ophthalmologist. This was a game changer for sure for the lack of balance, nausea, cognitive fatigue, and headaches. Then again, getting the root canals and crowns done helped resolve a lot of physical pain in that region of my body too. Again, having good knowledgeable providers really makes a difference.
What did you learn from this life-changing accident that you didn’t know before?
I didn’t know I was capable of taking and tolerating the level of pain that I have endured for so long. I have learned what it means to be disabled and to live with disabilities; how the world is not fully prepared to accommodate or understand people with certain disabilities.
If you could go back and replay everything you did to heal from your injuries all over again, what would you do differently?
I would have stayed in the hospital longer and my family would have demanded more aggressive treatment of my injuries before releasing me to Neuro-Rehab. We would have gotten vision testing from a Neuro-Ophthalmologist, audiology testing, and reconstructive surgeries, and oral care without waiting on insurance. Educated ourselves about our rights and the laws while still in hospital. I would want my family to take more pictures so I could piece more together. Gotten support for my family so they weren’t doing everything themselves.
This is Caren Robinson.
What advice do you have for those who are presently coping with traumatic brain injury and polytrauma too? And what advice do you have for their family and friends?
The advice I would offer is that healing takes time. Be patient with yourself. Find your voice with your providers, with your family, and with your friends. Find a way to tell your story. Trust what you know about your own body. Ask for help. Work with a Speech Therapist. Find a Neuro-Ophthalmologist; see an Audiologist; Get Lab work to check Hormones and a thorough Thyroid Panel. Consider using a weighted blanket, blindfold, ear plugs and sunglasses to help with Brain Injury symptoms. If it is possible, acquire a SPECT CT scan from Cerescan or a similar organization. Join the Brain Injury Association group in your State or Country. Find a support group either online, face to face, or both. Ask questions. Use a notebook to write things down. Speak out loud about your symptoms. Don’t keep them to yourself. Pace yourself.
Develop a routine with the patient. Be patient with repeated questions and lack of memory. Take them seriously and do not pre-judge them and assume you know how they are feeling… ask. Accept that just because you may not be able to see an injury doesn’t mean they don’t have one. Establish a routine that allows you to take care of yourself. Acquire a Medical Case Manager. Help them keep track of medications. Don’t take their mood changes personally. Don’t take personality changes personally. Recognize that their effort may be inconsistent based on how they are feeling from moment to moment or day to day. Be willing to advocate for them or speak for them when they can’t speak for themselves. Get to know their patient rights with the facility they are in or involved with.
Lastly, how are you doing these days?
These days I am feeling blessed and interested in continuing the process of bettering myself. I am feeling fortunate that neither myself or my family members have ended up with COVID-19 yet or suffered to the extent that other families have during this Pandemic. I am fortunate enough to be alive and able to think for myself, dress myself, do my own toileting, and have a different quality of life… but a life worth living.
I am committed to bringing awareness to Polytrauma and Brain Injury. I am focused on building my Coaching business. I am also still grateful for the pain I feel still because it keeps me fresh, aware, and thankful that I am still present and able to feel my body still.
I still struggle. Some days are easier than others. Some days are harder than the day before. Every day is a new opportunity to better myself and develop healthy habits. I like to say, “any day above ground is a good day”. Keeping my attitude and mentality focused on positivity, possibility, and creating a culture of compassion and awareness is a way I hope to pay it forward to the Universe and the Global Community. Here I am, never giving up. Never giving up HOPE.
Caren is working on managing her weight and getting off the cardiac meds she is on this year. Her goal is to make it to the end of 2021 without COVID and without dying; to build her business and accomplish some educational milestones. You can follow her journey through this on her websites www.hopetbi.com and www.vitalability.com, or ask her anything you would like to know about polytrauma and brain injury using the comment box below.
Jack was in his early 50s when he discovered pathological demand avoidance and realised it might be the cause of all his difficulties with getting things done. For World Autism Awareness Day (April 2) and Autism Awareness Week, he told us how the condition has affected his life and what understanding it did for him.
“I realized that PDA had cost me jobs and my first marriage.”
Q: Hi Jack, welcome back yet again. Let’s talk today about pathological demand avoidance. For those who don’t yet know what it is, could you first explain what it is?
A: Pathological Demand Avoidance (PDA) is a type of autism-spectrum disorder first described by British psychologist, Elizabeth Newson, in the 1980’s. It describes a subset of people with high-functioning autism-spectrum disorder and is characterized by an extreme resistance to completing everyday tasks or anything perceived as a requirement. As such, it can be quite debilitating since it makes even the simplest and most routine tasks nearly impossible at times.
How does pathological demand avoidance present in your life and how often do you encounter it as a school teacher?
I am now in my early 60’s and didn’t realize that I had PDA until I was in my early 50’s or about ten years ago. At the time we had just discovered that my young daughter was on the autism spectrum. After reading the symptoms of autism, I realized that not only was I on the spectrum, but my sister, mother, and two nieces were, too.
While we were exploring treatments for my daughter, I came across a PDA symptoms checklist and realized that it fit my daughter, sister, and one of my nieces as well.
Once you have a diagnosis or suspected diagnosis like this as an adult, you immediately cast back across your life to re-interpret events. I realized that PDA had cost me jobs and my first marriage.
I realized that I had extreme difficulty managing money as a young adult. When I was living by myself, I would on a somewhat regular basis allow the electricity to be cut off in my house. I would receive the bill and just be incapable of paying it even though I had the money to do so. The steps to doing so would just feel overwhelming. I would be paralyzed with anxiety at the prospect of paying the bill. So, eventually, the electricity would be shut off. I’d usually wait a day in the dark before going down and paying the bill and late fee and wait another day for it to be turned back on. That is probably the best example of PDA. The ridiculousness of the situation exemplifies just how perplexing the whole thing is.
I remember sitting on the couch with my first wife near the end of our marriage with her demanding that I write the check to pay a bill. I just couldn’t do it. Fed up with my inexplicable refusal, she wrote the check and mailed it. She left me a few months after that.
Another example was occurred during a staff meeting at a treatment center. A co-worker’s father had died, and we were passing around card to sign. When it came my turn, I couldn’t do it. I just couldn’t. I sat horrified by my own inability knowing that I should, but I couldn’t. Of course, I immediately alienated everyone there.
One of the things about autism-spectrum disorder including PDA is that it is a developmental delay, meaning that your brain is maturing more slowly than those of your peers. You may not gain all of the skills that your peers come to naturally, but some of them will develop more slowly. As I’ve gotten older, I have been able to manage my PDA better in part because my brain became more mature.
A neurotypical brain reaches its full maturity by about age 25. Mine didn’t until I was about 35 and even then, I needed to work hard on managing the anxiety that drives PDA.
While it makes many of the routine tasks of teaching difficult, it helps, too. I understand and am sympathetic to any student who has a mental health disorder or any difference from her age group, especially those with PDA. I have advocated for such students in staff meetings and with their parents convincing the parents to seek testing in order to instigate an IEP or educational support program for their child within the school. I have also encouraged faculty members to adapt their classroom requirements helping them to better understand the baffling reactions of some of their students.
Out of a class of 20, I have at least one student with autism-spectrum disorder in every grade level I’ve taught. Sometimes more than one. Every year, I have at least one new student with PDA out of the five or six classes that I teach.
What changed in your life after you realised such a condition existed? Did you have to go through anything special after being diagnosed with it?
My inexplicable behaviors became more understandable. That was the biggest effect. Even today, I’ll recall a memory that included me being frozen by anxiety unable to perform some routine task, either at a job or in a social situation, and realize that it was yet another example of PDA afflicting my life.
Nowadays, I realize that if I don’t get started with certain tasks straight away, I won’t ever do them. That really helps with doing the routine tasks like housekeeping chores. Since moving to Cambodia, I am our housekeeper since I am not working this year, I have had to do everything with a minimum of procrastination. It has helped for me to just say to myself, “If I don’t do this right now, I’m not ever going to do it.”
The biggest thing that has changed, though, is that I’m more accepting and understanding of myself, especially, when I am having a difficult time getting started with doing something.
What strategies do you use to cope with pathological demand avoidance these days? What works best and what does not work at all?
I realized that when I am given a task, I will unconsciously tag it as something that I’ll never be able to do. Before my “diagnosis”, I would rarely realize it, but, now with my new understanding, I more frequently catch myself thinking about it. For example, my daughter wanted modeling clay for a Christmas present this year. Buying gifts in general has been a non-starter in my life. It is something that I just can’t do and because of it, I have abandoned significant relationships. It caused me to distance myself from my mother and sister, for example. I felt like I was letting them down since they never failed to get me birthday and Christmas presents, but I struggled so mightily to reciprocate. I felt like they would resent it and be angry with me.
Getting something like modeling clay in a developing country like Cambodia could be a very difficult task, especially in the time of #COVID19. You have to reach out to people to ask where it might be found; you have to call ahead and overcome whatever communication barriers might be there; you have to go to the store and negotiate the purchase. Going to the store is not as easy as it sounds, though. Addresses often aren’t reliable. Phone numbers don’t always work, but that doesn’t mean the store is not open. I still haven’t gotten the modeling clay. I probably won’t get it for her upcoming birthday, either, even though I really really want to. It is maddening. But the anxiety and uncertainty are nearly impossible to overcome. It really assaults your self-esteem. After a lifetime of it, it really grinds you down. Honestly, I am ashamed of myself for failing to do something like this.
Learning to relax, focusing on getting started, and breaking things into more manageable steps all help, but as the modeling clay example shows, it doesn’t overcome everything.
Which 3 objects or people are helpful for a person with pathological demand avoidance?
I can’t say that there have been any people that have been explicitly helpful to me. There certainly haven’t been any objects. There have been some techniques, though.
One of things I’ve begun doing that seems to help a lot is thinking through the things I need to do the next day as I lay in bed before going to sleep. I will imagine the sequence of events of the next day in exquisite detail: getting up at a specific time (I usually get up at 5:00 AM without an alarm), making lunches and breakfasts for my wife and daughter, doing the dishes afterward, starting the laundry, getting my daughter started on her school work (we’ve pulled her out of school because it has proven to be overwhelming for her), and so on.
Avoiding procrastination. My best semesters at school were those in which I took 18 semester hours. The average semester course load was twelve. My worst semesters were those in which I had dropped from twelve to nine or six. The difference was procrastination. With 18 hours, I had no time to procrastinate. I either did the assignments right then and there, or I was sunk. With nine or six hours, there was plenty of time to do it later. Getting started is more than half of the battle.
In that sense, routine helps. I’ve found it difficult to maintain a schedule for most of my adult life. The only thing I’ve done routinely ever is walk my dogs twice a day for obvious reasons. I like teaching because of the routine and predictability. My sister retired from the US military. She stayed with it because of the routine and predictability.
And, identifying emotions. One of the sources of anxiety, confusion, and refusal is the cacophony of emotional reactions when a demand is placed upon me. It’s like every emotion is triggered at once and overwhelms me, which causes the anxious paralysis. Our emotions exist to help us navigate and cope with our environment. If you can’t accurately identify your emotional response to an event, then you cannot react to it properly. Your best course of action then is to do nothing until your emotions get sorted out. By focusing on that emotional response, I can determine which emotions predominate. I can engage in some soothing self-talk and reduce my anxiety.
Some things clearly don’t work. Rewards and punishments don’t work with people with PDA. Logical explanations do, but you often have to have time for those explanations to percolate. If you put too much pressure on someone with PDA and start limiting choices and options, you’ll get an emotional meltdown. These can be pretty ugly and include real violence, lots of swearing, hysterical crying, and other histrionics.
Surprises are usually bad. Don’t surprise people with PDA, especially with requirements. Instead of saying, you’ve got to do this assignment right now, you should ask them when do they want to do the assignment, in half an hour or an hour?
Trying to get someone with PDA to do something can feel ridiculous. With my daughter, I have reached a point of thinking, “If you’d only do this one simple task that millions of people have done in the history of human kind on the planet, everything would be so much easier.” When you’re reaching that point, you know you’re coming up to a meltdown. It is past time to back off and give everyone space.
The problem, especially with school work, is that she does everything slowly and definitely does not meet deadlines.
Which place is most useful?
For me, there aren’t any real places that are useful. Much of the literature recommends establishing a safe place for someone with PDA to retreat to when life becomes overwhelming, but for me that never really appealed. Being left alone until I was ready to do whatever is about the only thing that worked.
What is the hardest part about having pathological demand avoidance and how do you move past that?
The hardest part of PDA is knowing that you’ve disappointed people with your inability to achieve simple tasks and requirements. I carry a lot of shame because of it. I have a lot of intrusive anxiety provoking memories. By now, I have one for almost every situation I find myself in, which is hard because no matter what I’m doing, I can trigger an anxiety provoking memory to disrupt my thinking and emotional state. If I’m focused on doing something, it isn’t as bad. When I’m doing tasks that don’t take as much focus or that aren’t as distracting, then I can be flooded with anxiety for no apparent reason.
What advice do you have for people with pathological demand avoidance in their lives too?
Seek routine. Develop healthy self-talk so you’re not blaming yourself for all of your failures to achieve, which there will be many over your lifetime. Understand what triggers absolute refusal and try to get those in your life to avoid triggering you.
What advice do you have for people in general when in the company of an individual with pathological demand avoidance?
Avoid making demands. Offer choices. Understand that somethings are just going to be impossible for that person to do and figure out a way that they aren’t hurt too badly by them.
Lastly, what has your pathological demand avoidance diagnosis taught you that you never knew before?
People are not lazy. People who aren’t performing to expectations or meeting expectations aren’t doing it because they don’t want to but because they can’t. No one sets out to fail. When failure happens, it is because there are other forces at work besides being lazy. Everyone is motivated to do something and everyone achieves something with that motivation.
Jack hopes to run a marathon before August (“but #COVID19 and my PDA are making that difficult”). You can read more of his thoughts at his website, The Psy of Life, or chat with him using the comment box below.
Pamela Ellis was having a regular day, feeling great, when all of a sudden she began feeling extremely sick. Everything went downhill from there and she soon found herself needing emergency surgery for an ectopic pregnancy. She told us what that and the 6 months that followed was like.
“I cried every day for 6 months.”
Q: Hi Pam, welcome to LUCK-IT! To start, could you tell us a little about yourself?
A: Sure! I’m a 39-year-old stay-at-home mom to 3 beautiful children and wife to an amazing husband. I spend most of my time reading, meditating, studying spirituality, mythology, and folklore, hiking through the woods, helping my husband with his race car, and writing my blog.
How did you find out about your ectopic pregnancy? What were the signs that led you to discovering so?
I learned about it at the emergency room. I had no idea I was even pregnant, or that it was ectopic until I experienced the partial rupture leading to an emergency life or death situation with internal bleeding. Looking back there were minor signs but I had no idea at the time they were ectopic pregnancy symptoms. I missed one menstrual cycle but never took a pregnancy test because I didn’t have any pregnancy symptoms. I’ve had 3 successful pregnancies before this one and I always have pregnancy symptoms alerting me that I’m pregnant often before a test tells me so. I assumed all this was from stress because I had been under a tremendous amount of stress before this happened. So I was waiting it out. I figured if I was pregnant I would find out eventually anyway. I had no reason to think there was something wrong beforehand.
What happened next?
I went to use the bathroom that day and then suddenly I became really sick. Dizzy, nauseous, and super hot. So I laid on the couch hoping for it to go away on its own but my symptoms only got worse. I thought my appendix had burst. Then my shoulder started to hurt worse than anything else to the point I couldn’t move without extreme pain. I was also very pale and I couldn’t stand or walk without struggling to remain conscious, so I rushed to the emergency room. I didn’t know it at the time but shoulder pain, called shoulder tip pain, is a symptom of internal bleeding. I had been bleeding internally for 15 hours before we found out why and had no idea.
For those who might not know, can you explain what an ectopic pregnancy is?
An ectopic pregnancy is when a fertilized egg grows outside of the uterus and implants somewhere else in the belly. It’s a pregnancy in the wrong location. Often in the fallopian tubes. It is very dangerous. Always a life-threatening situation. Symptoms vary from painful to nothing at all, so it’s imperative to be seen the second something feels off. I had practically no symptoms. I had no pain the entire time. Looking back on it, I did have an odd sensation on the left side of my lower abdomen but it wasn’t extreme enough to bother me. My cycle was also off. I had brown discharge a week before the rupture and experienced extreme bloating. Other than that, nothing else. I didn’t even have pregnancy symptoms.
“Me and my husband holding the frame I made of our baby’s ultrasound pictures.”
What was your routine like right after your ectopic pregnancy? What did you do to get better?
Right after my ectopic pregnancy, I spent a week on the couch. Because I had a rupture that caused internal bleeding, I had to have laparoscopic keyhole surgery to remove the live baby, my left fallopian tube, and save my life. I had 3 incisions on my stomach and was on heavy pain medication. It was very painful and it hurt to walk or move my stomach at all for a week. I couldn’t do much for 2 weeks. I rested as much as I could because I lost 2 liters of blood and needed blood transfusions which caused me to feel extremely exhausted for the first few days. Then the second week I was cramping badly while shedding the uterine lining from the pregnancy. Those contractions felt like labor pains! So I slept most of the time to help my body recover from the trauma.
Which 3 objects or people were most useful then?
My husband. He was my support system. He helped me so much! I don’t know what I would have done without him. I also had a walking stick he bought me that helped me to get around the house. Walking was extremely painful and I couldn’t stand up straight so that stick was my saver to getting around the house and grabbing things I couldn’t reach. I also bought a wedge pillow that helped me sleep in my bed instead of the couch. Because of the surgery and trauma to my stomach, I was unable to sleep on my side or lay flat on my back. So the wedge pillow allowed me to sleep comfortably upright for 6 weeks.
Which place was most useful?
The Ectopic Pregnancy Trust online. I had no idea what an ectopic pregnancy was, or what to expect in my recovery, or exactly what happened to me. I was completely left in the dark. In order to better understand what happened and what was to come, I lived on that website for weeks.
How long did it take you to get over the shock of having had an ectopic pregnancy? What really helped you feel better?
As of right now, it’s been 6 months since it happened and I don’t think it’s something that you can “get over.” I’m still in shock, I’m still in disbelief, I’m still recovering, I’m still trying to wrap my brain around the fact that I almost died, and I’m still brokenhearted over losing my baby. My baby was alive and well, just in the wrong location. I heard his heartbeat and the doctors kept reminding me that he was a fully formed living baby with a face, fingers, hands, toes and feet. It was also a boy. Someone made me a baby blanket with the baby’s initials on it and my mother made me a trinket with angel wings and the baby’s name. I found that comforting. I have an angel candle that I light every day in remembrance of my baby and I also created a shadow box frame with the ultrasound pictures in it along with my favorite sayings to help me cope with the loss a bit. It’s been rough for me.
“A picture of the angel candle I light every day in remembrance of my deceased son I lost.”
What did you learn from having had an ectopic pregnancy that you didn’t know before?
Good question! The one thing I learned from this is how precious life really is. I came face to face with death at 38 years old. I can honestly say I took a look at my life and thought – I’m not ready to go this young. I have so much more I want to accomplish and do with my life. It’s like I got a second chance. It also made me cherish what I do have even more. The people in my life mean so much to me and they almost lost me. All the little things that irritated and stressed me out I realized weren’t that big of a deal. Life is much more than that petty stuff.
Also, as a very anxious person that worries a lot, I realized more than anything not to worry about things I cannot control. Worrying is a waste of time. We spend so much energy worrying about things that haven’t even happened as a way to prepare but whatever does happen will never be anything that you conjure up in your head. So worrying is a big waste of time. If something does happen, you’ll just figure it out as you go. Nothing can be prepared for ahead of time in life.
This also made me realize how much I love being a mother. Motherhood can be stressful and having raised 3 children already, one on the autism spectrum, there were times where I was frustrated with being a mother. Losing my baby made me realize more than ever how precious my children are. I may have taken that for granted a bit.
If you could go back and replay your experience with the ectopic pregnancy all over again, what would you do differently?
If I could do it all over again I would go to the doctors as soon as something felt off instead of waiting it out. My body was telling me for a couple of months that something was wrong and I waited hoping it would resolve itself instead of just going to the doctors. Because of Covid-19, I was avoiding the hospitals. Waiting almost cost me my life. I was unaware that what was happening was an ectopic pregnancy. I had no idea what an ectopic pregnancy was or what any of the symptoms were. I also had no idea I was even pregnant in the first place because I didn’t have the same experiences or symptoms as I did with my other 3 pregnancies. I should have just taken a pregnancy test and went to the doctor the second I noticed something was wrong. The second I missed my period I should have gone to the doctors and it would have been discovered and resolved without me almost dying.
What advice do you have for those who are presently going through or getting over an ectopic pregnancy too? And what advice do you have for their family and friends?
For those that are going through this just know that everything that is happening with your body and everything that you are feeling is absolutely normal. That is the biggest question I see most women who have gone through or are going through this ask. You just went through, or are going through, something very traumatic and very terrifying. It is normal to be upset, to be scared, to be grieving. To grieve the loss of your fertility, to grieve the loss of a piece of your body now gone, to grieve almost losing your own life, and most importantly the loss of your precious baby and the hopes and dreams that came with it. For those close to someone going through this, they need as much support, patience, and compassion as possible. Hold space for them to talk about it as much as they want, and share as much as they want about it if they choose without judgment or advice. Give them the space to heal in their own way. They just lost a lot and it’s very traumatic. Love is the best medicine.
Lastly, how are you doing these days?
I’m doing much better actually, thanks for asking! I didn’t think I would because I took this so hard. I cried every day for 6 months. My body ached for a long time and it felt like it was taking forever to get past this. I just started my exercise routine back up and I’m starting to feel much better mentally, emotionally, and physically.
15 years ago, depressive symptoms led to T getting her first diagnosis of mental illness. 5 years after that, after having a hypomanic episode, she was diagnosed with bipolar disorder. We reached out to find out what it’s like to be in her shoes, and what a regular person can do to help.
* Trigger Warning: The following interview involves a discussion about self-harm and suicide. Please do not read on if you may be sensitive to such topics.
“Getting diagnosed actually felt freeing and empowering to me, as I finally felt that my constant lifelong struggles were validated.”
Q: Hi T, thank you for coming on to share your story. Could you tell us a little bit about yourself and how old you are now?
I’m a 36-year-old Singaporean Chinese woman. I’m single but currently have 2 furkids (I used to have 5 but the others have since passed on). I work full-time in customer service.
When did you first realise you had bipolar disorder and how did you end up getting diagnosed?
I was initially officially diagnosed with major depressive disorder (MDD), anxiety, and personality disorder in early 2005, weeks before my 21st birthday. It was only after my first hypomanic episode in 2010 that the diagnosis was changed from MDD to bipolar disorder type ii.
By my first visit to the Institute of Mental Health (IMH) in 2005, I had been self-harming by cutting my arms with a razor blade for several years already. However, the cuts were getting deeper and more frequent. I also cried daily for no identifiable reason, and had constant suicidal thoughts and feelings.
Prior to my diagnosis by my psychiatrist at the IMH, I saw a University counsellor who told me that there was nothing wrong and I had no reason to worry, despite his full knowledge of my symptoms. One day, after having inflicted several severe cuts on my wrists, I felt so desperate that I decided to visit the polyclinic to request for a referral to IMH. However, a referral appointment would take weeks or months, and the doctor who attended to me was alarmed at the severity of my symptoms so she wrote a memo for me to be seen at IMH A&E that very same day. It was my psychiatrist at IMH who eventually diagnosed me, first with MDD and subsequently with bipolar ii disorder.
A portrait sketch of T. “Done by a dear artist friend sometime during the first 2 or 3 years of my diagnosis (which he was aware of).”
In hindsight, what were the earliest symptoms you had and how old were you when those happened?
I first hurt myself at age 14 by clawing at my own arm with my nails until I drew blood. After that incident, the next time I hurt myself was when I was 18, by cutting my arms with a razor blade. The self harm became regular then, and slowly became a daily affair.
By the time I sought medical treatment, I was cutting myself several times a day. It took several years of treatment by my psychiatrist at IMH until the frequency of the self-harm decreased. By my 30s I only cut myself on a handful of occasions a year, and in the past 3 years the frequency has diminished to only about once a year, and the cuts are less deep and scarring.
This self-harm was the most visible symptom of having a mood disorder. However, looking back, there were signs that I had already experienced depressive episodes since childhood. The earliest I remember was when I was around 7 or 8 years old. I had extremely poor self-esteem and would have bouts of crying for no reason. And when I was 12, I was obsessed with suicide, although I did not have severe suicidal thoughts or feelings then. It manifested in me drawing fake scars on my wrists and bandaging them as if I had real wounds. My Chinese teacher thought the scars and bandages were real but I don’t recall if she did anything to help. So, in essence I have had depressive tendencies, thoughts, and behaviours since childhood.
How did it feel to be diagnosed with bipolar disorder? How old were you then and how did you think it would affect your life?
I was just about to turn 21 when I received my first psychiatric diagnosis of MDD, anxiety, and personality disorder. 5 years later, at 26, I had my first hypomanic episode and the diagnosis was changed to bipolar type ii disorder.
I never thought about how it would affect my life because as mentioned earlier, I had actually had depressive tendencies since childhood, so to me it was all normal. I was used to a constant low mood, crying often for no reason, and an obsession with self-harm and death. Frankly, getting diagnosed actually felt freeing and empowering to me, as I finally felt that my constant lifelong struggles were validated, they finally had an explanation and I wasn’t just being self-absorbed and self-pitying.
Were your first presumptions right? Is living with bipolar disorder what you thought it would be?
I didn’t go into this with any presumptions. As mentioned earlier, I had lived a life of dysregulated mood, and had been displaying symptoms for years, so this was status quo for me, just that now I had a name for it and I had people (my Dr) who cared, understood, and wanted to help. Other than that, I was too busy crying, cutting myself, and trying not to commit suicide to think about how my life would change after diagnosis.
Can you describe what bipolar episodes are like for you? How often do you have such episodes?
I have type ii bipolar disorder which involves depressive episodes as well as hypomanic episodes.
My first hypomanic episode was in 2010 and I have only had a few more over the years since then. However, the rest of the time that I was not hypomanic, I was deep in the depths of severe, suicidal depression, since around the time I turned 18.
I think most people understand depression, including the feelings of hopelessness and worthlessness. Perhaps less understood would be hypomania. My mind would race non-stop, 24 hours a day. I would survive on a couple of hours of sleep a day, even without drinking coffee. I was constantly writing things down in my notebook which made sense to me at the time, but later on after the episode I wouldn’t fully understand the notes. They weren’t exactly gibberish, just that there was no point or sense to them. I felt euphoric, on top of the world, the complete opposite of when I was depressed. I constantly had new ideas about the amazing things I could and would do. I had slightly delusional thoughts like thinking I could become a famous successful person.
Thankfully, my few hypomanic episodes over the last 10 years have only lasted a week or two each time. In the past few years I have had periods of 2 or 3 days when very mild and slight hypomanic symptoms would appear, but I would not categorise them as full hypomanic episodes. I am careful not to let myself feel as if I am flying, I am careful to recognise the signs and thankfully so far I have not needed to seek extra help or support during those periods. As for the severe, constant depression, it finally eased in late 2017 and I am very carefully cautious when I say that my depression has been much milder in the 2.5 years since then.
“Not all mental illness is only in the mind. My scars are proof of my survival and I am not ashamed of them.”
What was your worst episode like?
In terms of depression, I was pretty much at rock bottom from 2005 to 2017. I cried and cut myself daily. I was constantly suicidal. It was pretty much one long episode.
In terms of hypomania, the worst episode was my first in 2010. I couldn’t focus at work as my mind was constantly racing and flitting from one new idea to the next. I was planning my sister’s bachelorette party and it was extremely hard to concentrate on what I needed to do to make it happen. However, the energy from the hypomanic episode did help in motivating me to arrange all the logistics and procure all the items needed for the party within just a couple of days, whereas my normally-depressed self would have had no energy whatsoever to leave the house even once a week. Not that hypomania is a good thing, but it can make people very productive. But not necessarily in the right ways or directions.
How is your bipolar condition presently being managed? What medications or treatments are you on and what do they do?
Currently my condition is managed by taking daily medication and seeing my psychiatrist monthly. The psychotropic medication I take includes: Antidepressant, Mood stabiliser, Antipsychotic. I also have medication to ease anxiety and promote sleep, which I take as needed.
Do you have any plans to get off those medications someday? Why so?
I don’t have any plans or intention to stop taking medication anytime in the future.
I have been on psychotropic medications to treat my mental illness for 15 years without any breaks in between. Medication has changed my life. I tried several different antidepressants before I found the one that worked for me, and I remember very clearly that it was “like flipping a switch”—I was in such a dark place before medication but once I found one that worked, it was like a small light was switched on and it helped make it less nightmarish to get through each moment.
I have tried before to reduce dosages of my various medications. At one point, I was taking 120mg of antidepressant daily but I have since reduced to 30mg. However, my attempts at reducing others like the mood stabiliser have not been as successful, as even small dosage reductions made the symptoms return. Some months ago, I also inadvertently ran out of antidepressants for a week, as I had left my bag of medication at the hospital pharmacy and didn’t have time to go pick it up before running out of antidepressant. That one week was pure hell for me, as the severe suicidal depression returned and I was crying daily and almost unable to cope with work. Thus, that “accidental stoppage” of a medication has showed me that I need a certain minimum dosage to continue to function, so I don’t have any plans to try cutting down on medication any time soon.
Some people like to shame others who are on medication for psychiatric conditions, saying that we should just use “natural” treatment methods such as yoga, exercise, and healthy eating. Some people say it’s bad to keep putting chemicals into our bodies. I don’t share those sentiments. I feel that if a person needs pharmacological therapy to help with the treatment of an illness, then they should be allowed to do so without being shamed.
I have accepted that I may need to be on psychiatric medication for life, but it is this that helps me to stay functional, to keep a full-time job and not to stay in bed crying and cutting myself daily. No one should be allowed to shame me for that, just as no one should be allowed to shame others for depending on spectacles to correct their vision.
The medications T has to take on a daily basis.
Which 3 items or people help you most when it comes to coping with your bipolar disorder?
My cats definitely help me to cope with my bipolar disorder. They are calm and comforting, always there for me, and always showing me unconditional love.
My family (parents and 2 siblings) are also a source of support. I have always been close to my siblings, but my relationships with my parents has only improved within the past 5+ years. My family provides emotional support but also sometimes financial support, such as during the period when I was jobless and unable to afford my treatment at IMH.
Finally, having my razor blade and medications nearby at all times helps me to know that it’s always there just in case I need it. Cutting myself helps release tension and brings about calmness and brief relief from the emotional pain, so even though I seldom cut myself any more, it’s still comforting to know I have the tools to do so if I need. This may not be a healthy coping mechanism, but it works for me at this point in my journey. Having my medication on standby also helps me to know that I can take an anxiety pill or sedative in the event that I really need it.
Which place helps most?
My bedroom is the centre of my world, one of the only places where I’m really allowed to be myself. I’m extremely introverted and need a lot of time alone to deal with my bipolar disorder and anxiety, as well as to rest and recharge after spending time with others.
Apart from my bedroom, the IMH hospital has also come to be a safe space for me, as I know there are medical professionals around who can help me. I have had many sessions with my psychiatrist and psychotherapist at IMH which have brought me healing and recovery, and many of the other staff (nurses, administrative staff) at the clinic are also very helpful in dealing with patients who are not coping well. And I get my medication from IMH, which as I have mentioned is crucial to my day-to-day functioning. So, being at the clinic helps me to feel safe and validated.
What advice do you have for those who’ve only just been diagnosed with bipolar disorder?
Learn as much about the disorder as possible, so that you can recognise the signs and symptoms.
Understand what treatment is helpful, and stick to a treatment plan even if it doesn’t seem to be working at first. It took me years to find a treatment plan (including medication) that worked.
Hang in there. Build a support network—family, friends, pets, your healthcare professionals (even my GP helps briefly counsel me when I have acute episodes, and lets me know if he thinks I ought to seek emergency treatment at IMH A&E).
Have a structure and routine, it helps a lot to have a fixed schedule so that when you are too depressed or hypomanic to think or plan rationally, you still have a sensible routine to follow whilst you wait for the episode to be over.
And don’t be ashamed to reach out for help. You don’t have to go through this alone.
What advice do you have for everybody else when interacting with those with bipolar disorder?
Just like with any mental illness, people with bipolar disorder are not freaks or mentally deficient. There is a lot of stigma and many people think that persons with mental illness should be relegated to simple, menial jobs where they don’t need to interact with other human beings, as people fear that all mentally ill people will cause harm to people around them. This is not true. So many people with mental illness are smart, intelligent, kind, empathetic human beings. We just need you to educate yourself, seek the truth about mental illness, and be supportive instead of stigmatising us.People with bipolar disorder can suffer from extreme moods and mood swings. Please understand that these are not under our control, and we don’t mean to harm you or take it out on you. Look for the signs and symptoms of episodes, and provide support (including encouraging the person to seek treatment) where possible. If not, just be there for us. You won’t know how much it means to us for you to do so.
If you would like to ask T questions about mental illness or show your support of her, you may do so using the comment box below.
More interviews with people who have been through grief or other physical or mental hardships. available here.
Photographs courtesy and copyright of T. Interviewer: Sy Sponsor or support The Strong series here. Want to be featured too? Tell us here. If you found this article useful:
21 years ago, Oliver Chong, a theatre professional we interviewed earlier this year, developed the symptoms of schizophrenia. He began having symptoms once every 3-4 days, then once a month, once every 3-4 months, once every year, till finally years would go by before he developed further symptoms. We had a chat with him about his journey with schizophrenia.
“I decided that I had to observe and study it in order to overcome it. I had to behave and look normal when it comes so that nobody could tell. I had to figure out the trigger. But first, I had to overcome my fear of it.”
Q: Hi Oliver, thank you for returning to share another side of yourself with us. Let’s talk about schizophrenia this time. When did you first realise you had it and what were the symptoms?
When I was nine. I didn’t know that it was schizophrenia until I was twenty-two.
It felt like someone had suddenly put a fish bowl over my head. The surrounding sounds suddenly became distant, like how you would hear them from inside a fish bowl, except that the sounds are now at half speed. Not only so, as far as my eyes could see, everything that moved also appeared to move at half speed. So everything that I could see and hear was in slow motion. On top of all these, there was a perpetual noise in the more distant background. It sounded like it might have come from a kitchen with many people holding unintelligible conversations with one another, over the noises of pots and pans.
In the beginning, I was very afraid and confused. I waved my hand in front of my face with all my might to make sure that it was really moving fast, but all I saw, was my hand waving in slow motion. When I talked, I heard myself speaking in a dragged-out fashion, but I really wasn’t. I told my mother about it and she was as clueless. She said perhaps I was just too tired and told me to go take a nap. Indeed, a nap always worked. The next morning I would be back to normal, until the next time it was triggered.
After a while, I decided that I should confront it instead of sleeping it out. I decided that I had to observe and study it in order to overcome it. I had to behave and look normal when it comes so that nobody could tell. I had to figure out the trigger. But first, I had to overcome my fear of it.
When it’s triggered, people would tell me that I was moving and speaking “too fast”. And I realised that I had inadvertently moved and talked faster than usual because everything appeared slow. I had to manage and adjust the speed of my movement and speech, and not be misled by my warped perception of time.
I studied the pattern, duration, frequency and circumstances under which it would be triggered. And then, I would experiment with putting myself under different circumstances, to find one that might be able to stop it. But as soon as I figured all these out, they would all change. And I would have to repeat the whole process over and over, like it was playing catch with me. However, the duration and frequency of the “visits” had decreased steadily over the years.
Over the years, I have long overcome my fear of it. And the process of investigating it has become a welcomed distraction from the mundane. Like a game with a friend of many years. The frequency of occurrence and duration has decreased so much and I would miss it and feel delighted when it “visits”. I wouldn’t want to do anything to make it go away because it would only “stay” very briefly. I would even feel a tinge of sadness when it “leaves” because I wouldn’t know when I would see this “friend” again. The last time it visited was at least four years ago, when I was in my late thirties.
It was only through consultation with a psychiatrist when I was twenty-two that I got to know its name.
How did it feel to be diagnosed with schizophrenia? How old were you then and how did you think it would affect the rest of your life?
Surprised. I only got to know that it was schizophrenia when I was twenty-two, after living with it for thirteen years. I had long gotten used to it by then and had managed it so well that nobody ever knew and it didn’t bother me at all. I felt very very lucky that I’ve had it easy, knowing that many people suffered and struggled with it. I did not think it would affect the rest of my life as I was confident I could manage and cope with it.
Were your first presumptions right? Is living with schizophrenia what you thought it would be?
I was right. I have been coping well so far. Though the symptoms are no longer a cause for worry, I do experience bouts of depression occasionally, a possible spin-off from the condition, which I have to fight and fend off.
Can you describe the last time you had a schizophrenic episode? What was that like, what triggered it, and how long ago was it?
It was at least four years ago. Please refer to the symptoms in the above response (fish bowl auditory, warped auditory and visual perception of time; and “voices”).
At the very beginning, the trigger was always stress and anxiety, and under the condition when I was alone in a quiet place. The remedy was to go to somewhere noisy with people and the duration of the episode would be shortened.
Once I figured out this pattern, it evolved. And the condition became that when I was with many people in a very noisy environment. The remedy was to go to somewhere quiet and be alone.
And then, the condition rule stopped applying. The remaining constant was still stress and anxiety. The remedy was to ignore it and focus on what I was doing. I wasn’t bothered by it because I could function as normal and I could be doing a presentation in a meeting with people and nobody could tell.
And finally, no rules. Not even stress. I could be on a holiday trip in the mountains when it happened. By then, the frequency of the symptoms was like once a year, and I was more than happy to welcome this “friend” of many years. I would enjoy its company and feel nostalgic when it leaves too soon.
What about your worst schizophrenic episode? What was that like?
The worst was at the very beginning when I was very afraid and confused with what I was hearing and seeing that was obviously different from everybody else’s. The harder I fought it, the worse it got, and I could hear my heart thumping very loudly in my head and it felt like my brain was going to explode. All I could do was to force myself to fall asleep and it would be gone when I woke up.
How has your schizophrenia been managed since your diagnosis? What medications or treatments have you had to cope with it?
The way I had been managing it years before the diagnosis. No medications or treatment. Though the psychiatrist I consulted with when I was twenty-two did prescribe me something, I didn’t follow [the prescription] because I had been coping fine all those years without any.
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Has the diagnosis of schizophrenia affected your relationships with other people in any way? At work, at home, or romantically?
No. Very few people even know about it until I told them.
What about physically? Is there anything you cannot do now because of schizophrenia, or anything you must do to avoid further symptoms of schizophrenia?
No.
You are a creative person by profession. Has there been any positives to having schizophrenia in that regard?
I wouldn’t know as I grew up with it. Perhaps the positives of experiencing something more than people without it? I realise, perhaps the years of dealing with the symptoms have made me very sensitive to space and time and others’ perception of it. This sensitivity is especially useful in my work as a director, actor and designer.
A production Oliver was in during which his experiences with schizophrenia served as a source of inspiration.
Which 3 items or people help you most with your schizophrenia? Why?
I can only think of one, and that would be how my dad had brought me up. He had always said that we should confront our fears, that we should always strive to choose fight over flight from our weaknesses, and there is more than one way to fight them than with just brutal force.
Which place in Singapore helps the most? Why?
Then, it changed according to the evolving trigger conditions. For noisy places, Orchard Road or hawker centre. For quiet places, library or the store room at home.
What advice do you have for those who have only been diagnosed with schizophrenia?
I wouldn’t dare. Not from someone like me who had it easy. Perhaps my dad’s advice might work for some people, but please listen to your doctor.
What advice do you have for those without schizophrenia, when interacting with those with schizophrenia?
Do not confuse sympathy for empathy. People with schizophrenia don’t need your sympathy.
What have you learned from having schizophrenia that you didn’t know before?
The fragility and reliability of reality.
Lastly, looking back to your childhood or younger days, were there any indications you might one day grow up to have schizophrenia?
I had it when I was nine. I did not see it coming at all. Not that I knew anything about schizophrenia then anyway.
Oliver will be striving to foster more collaborations with local and international artists over the next year. He hopes that his works and practice will continue to be desirable to his audience and relevant to the times. You can follow his work at his Facebook page or ask him more about schizophrenia using the comment box below.
More interviews with people who have been through grief or other physical or mental hardships. available here.
Photographs courtesy and copyright of Oliver Chong. Interviewer: Sy Sponsor or support The Strong series here. Want to be featured too? Tell us here. If you found this article useful:
When Cho Jun Ming was 19, his 54-year-old father was diagnosed with heart issues. Because his father was a kidney dialysis patient and could not undergo operations, he was sent to the ICU where he passed on just 2 months later. We asked Jun Ming how he coped with losing his dad before age 20, and learned from him all the things he wished he had done with his father when he had the chance.
“After the funeral, I fell into a severe depression and had to seek psychiatrists and psychologists. ”
Q: Hi Jun Ming, welcome back and thank you for sharing yet another part of your story. How did you find out your dad had passed away? What were you doing right before that and what did you do right after that?
A: At first, I received a call from my dad saying that he needs to go to the hospital but I was playing Xbox at my Poly [Polytechnic—an alternative to university in Singapore] friend’s house and didn’t bother. That was in the afternoon. That night, after my dad admitted himself into the hospital, I received a call from the doctors asking me to go to the hospital because he was like a time-bomb that could pass on at any time due to his heart condition. Immediately after that, I went straight to the hospital and from then on, accompanied my dad every day for 1-2 months before he passed on.
The day he passed, I was actually studying before going to visit my dad. And when I did I spoke with him, but when I went home I received a call from the hospital saying to rush down so I rushed down and saw that the machines were starting to beep slowly and he passed away in front of me.
What did it feel like when you first heard the news? What about at the funeral and in the days after?
I hated everything that existed. And I blamed everything and everyone—the doctors, God, everything except for myself. After the funeral, I fell into a severe depression and had to seek psychiatrists and psychologists.
How long did it take you to get over the grief of losing your dad? What helped most?
It’s been 4 years. I’m now still undergoing treatment with psychiatrists and psychologists because I was told that some of the memories and the trauma that I had when I saw how my dad had passed on are being blocked in my mind. I can’t get over the grief even now though it’s been better with time. What helped most is making films because as long as I keep making films, I won’t think about it.
One of the awards Jun Ming has since won.
Which place in Singapore helped the most?
Changi Airport. Sometimes when I feel lonely I’ll go to the airport and sit down and watch the planes fly, and watch families hugging each other and watch how people cry, smile and laugh with tears of joy. It brings me warm feelings.
How did your life change after your dad’s death? And how did your dad’s death change you?
I became less energetic and more negative and more paranoid about life. And soon I got much support from my friends and eventually turned to be better. Right now, I’m still recovering. My dad’s death gave me a wake up call. It boosts me and motivate me to do something better but of course I would rather he be alive.
If you could go back and replay the time you had with your dad all over again, what would you do differently?
I would eat dinner with him every day. I would talk to him and update him about what I’m doing. And also I would try to understand him and try to learn from his mentality as a person because he’s very mature, very calm and very patient—and that’s what I need. I would like to ask him to teach me things that I do not know and give me advice.
A recent photograph of Jun Ming.
What is it like being a young man without a father?
I think it’s very sad because sometimes I see my friends going back home and see their fathers and mother together and I feel that I just lost part of myself.
Which 3 objects/people can you presently not live without and why?
My phone. My mother. And my relatives. Because they are all my closest people and objects right now and I know I have the time to cherish them so I will not waste any moment.
Jun Ming and his important object: his phone.
What do you wish your father had done more of while he was still alive?
I wish he would have told me things he would have wanted because whenever I made mistakes he would just let me fall down by myself and never really scold me or beat me up because he wanted me to learn by myself. But because I was young, I didn’t know what he was trying to do until I grew up and reflected and realised… oh, I see. So I wish he would have scolded me and beat me.
What advice do you have for those who have only just lost their fathers?
There will always be people who are worse off than you. I have a friend who doesn’t have family. I have even friends who have parents but both are mute. So think about those in a very bad situation and try to know that you’re not always alone. And that you have the ability to bring joy to people and to yourself.
Lastly, what is the biggest lesson your dad ever taught you?
He taught me to be calm at all times. No matter if the sky is falling down, just remain calm. When you’re calm you’re able to see perspectives and things not many people can see.
Jun Ming presently makes films about societal issues and gives talks to people who are facing set backs in their lives. “It’s all about creating a positive impact on people in whatever ways I can through using both my backstory and my passion.” You can find out more about his films at his Facebook page or ask him about grief and recovery using the comment box below.
More interviews with people who have been through grief or other physical or mental hardships. available here.
Photographs courtesy and copyright of Cho Jun Ming. Interviewer: Sy Sponsor or support The Strong series here. Want to be featured too? Tell us here. If you found this article useful:
Cho Jun Ming failed his N-Levels on his first try at age 16, which meant he was left with extremely limited options for higher education. We asked him how he picked himself up and found out he found inspiration and support in the most unexpected places.
“I locked myself in my room and I skipped going out. I just cried.”
Q: Hi Jun Ming, thank you for coming back on to share your story. Can you tell us what it felt like when you first found out that you had failed your N-Levels? What did you do that very day and in the weeks after?
A: When I first received my N-Level results, I fainted. My best friend helped me up. And what did I do next? I locked myself in my room and I skipped going out. I just cried.
Why do you think you failed your N-Level exams? Was it simply lack of preparation for the examination or something else much bigger?
It was because I didn’t really study. I hated studying and I mixed with a company of friends who also didn’t study. Every day we would just hang outside and create troubles.
How then did you figure out your next steps after failing the exam? How long did it take you to figure that out and who or what helped you get over it?
My teacher proposed, after I failed, that I either go to ITE [Institute of Technical Education] or, since I don’t like to study, I just don’t study. I chose ITE. And ITE [which has some stigma for having the worst students in Singapore and was said to stand for “It’s The End” in a local film] is actually not the end. Around 1 year into ITE, it was my supportive classmates who helped me achieve my dreams in film-making.
Jun Ming during his N-Level examinations.
What was your routine like when you were trying to get back on your feet again? What did you do on weekdays and what did you do on weekends?
I started watching film tutorials on YouTube and on my free days I would go do some part-time acting and when even more free, I would go to the gym and build my physical body to be a person with a healthy lifestyle.
Did you have any further setbacks during that period? If so, how did you move past those?
Yes. Because I don’t come from a film school, not many people wanted to support me in terms of lending me their equipment or giving me funding. I just used my own pocket money and didn’t eat and used it to pay my cast. For equipment, I just borrowed it from ITE.
Which 3 objects or people were most useful to you during the above time period, when you were trying to get back on your feet?
It’s more people. 1) My classmates. 2) My lecturers. 3) My dad—my dad often talked to me during that time.
What did you learn from failing your N-Levels that you didn’t know before? How have you changed as a person?
I think learning how to be like my friends and studying hard, because academics is very important. Because I never studied and I failed, this is the thing I didn’t know. Or rather I knew but didn’t care. How did I change as a person? I understood I wasn’t good in academics, so right now I am pursuing my passion.
If you could go back and replay your time with the N-Levels all over again, what would you do differently?
Definitely study in the library with classmates who will not hang out with friends and create troubles outside.
What advice do you have for those who are presently coping with the failure to pass their N-Levels too?
Yes, academics are very important and you should be sad, you should be depressed, because all these emotions will make you learn and make you become a stronger person in the future. So you cannot avoid that. Move on and be positive, find the thing that you love and do the thing that you love. And one day, people will eventually give you their support.
What’s the worst advice you’ve been given, or have heard people giving? And what’s the best?
Worst advice was when I wanted to make a film and was told to face the reality and go home, and I was told that making films doesn’t earn much and that I have no talent. Best are any of the responses I’ve gotten from my films, positive ones that tell me it’s shaped their lives and changed their children’s lives, asking me to carry on and chase for my dreams and create positive change.
Jun Ming winning a film-making award.
Lastly, what are your present goals now and who can we interview to help you achieve those?
My goals right now are to represent Singapore in international film festivals. And who you can interview I think would be those industry professional movie directors, Boo Junfeng, Anthony Chen, Jack Neo, people like them because they’ve been through it and have more experience and they can advise.
A close-up of one of the film-making awards Jun Ming has since won.
Jun Ming is presently working on a film about Chinese Fengshui and hopes to be able to send it to international film festivals eventually. You can find out about his films at his Facebook page or ask him about failing N-Levels using the comment box below.
In June this year, we interviewed a protester from Hong Kong after she’d been caught in the most violent protest of that time, when tear gas and rubber bullets had been unleashed on civilians by the police. Since then, the violence in Hong Kong has escalated, with the police using live ammunition and water cannons on protesters, and the protesters in turn barricading streets, disabling public transportation and setting buildings on fire. We checked in on her to see how she’s doing.
“My mum is very scared.”
Q: Hi Wing* (*not her real name), nice to see you’re okay. How’s the protest situation in Hong Kong been since the last time we spoke?
A: Protesters have been getting more violent recently because the police have been using real bullets to shoot protesters. Molotov cocktails and fire are now used in weekly protests. People even tried to assassinate the police. On the day Carrie Lam [Chief Executive of Hong Kong] announced the emergency law, there were massive destructions including burning of MTR [Mass Transit Railway] stations, burning the trains, burning the railway in New Territories, burning the Bank of China…
People protest every weekend now. Sometimes, people also protest on weekdays if there are special situations like suspicious dead bodies being found.
The scene in Hong Kong, July 2019.
The last time we spoke, you said you were satisfied with the suspension of the extradition bill and would not be participating in any more protests—did that change in the weeks after?
Um, I no longer go to protest, but when the government implemented the anti-mask law, I thought it unreasonable. Schools even asked kids not to wear facial masks when sick. I think the government just wanted to make people more angry. They did it on purpose.
Public transportation has been disrupted by both protesters and riot police, traffic blocked by both barricades and fire, so how do people in Hong Kong get around these days? How have you been getting around?
People like to use the bus nowadays, and avoid taking the MTR. Because in August, police closed off one MTR station suddenly and asked the press to leave, then beat random passengers including disabled old people in wheelchairs.
But I still take both the MTR and bus, and sometimes drive. I enjoy hanging out. Indeed, streets are empty with no noisy tourists. I still go out during weekends but will go home before night. The police are more violent at night. Sometimes they just catch young people randomly. They also throw tear gas randomly. I am most scared of the tear gas because it has been everywhere in Hong Kong now. It is toxic to the human body and we cannot avoid it.
Shops have been closed for protests and because of related vandalism, and many shop owners have reported a decline in business. Has there been any consensus as to how businesses are going to be able to stay afloat if this situation continues for a long time?
Only the pro-China chain shops have been destructed. Those affected shops mostly make money from Chinese tourists. Over-tourism led to high rents. They better think of other businesses to do. I hope there will be business transformation for Hong Kong in the future.
Police fire a gun at protesters for the first time, August 2019.
How has daily life for the average person been affected by the protests? How often do people still go out for fun these days?
My mum is very scared, and she always asks me not to go to crowded places. She seldom goes out but I think she has over-reacted. Young people and people of my age still go out for fun. We just avoid going to places like the Legislative Council building and government buildings.
Has there been any concern that food and supplies will run out or become inflated in price if the protests persist? Have people been stock-piling at home in case of emergencies? Have you?
No way. Unless food is not allowed to be imported into Hong Kong.
The stock-piling thing only happened once. It was the day Carrie Lam implemented the anti-mask law under emergency conditions. People lined up in the supermarket because they thought the supermarket wouldn’t open the next day. They were right. Supermarkets really didn’t open the next day but restaurants remained open. So I just went to have lunch in a restaurant because I didn’t prepare for that.
Hong Kong protesters destroy China’s national flag, September 2019.
What about public services like law enforcement and the fire brigade? Are they still up and running like normal? If you called the police because of, say, a burglary or murder situation during a major protest, would the police be available, and willing, to assist you?
Public services are still running but if there is a burglary, I wouldn’t call the police because I don’t think it will help.
If somebody beat me up during a protest, I surely wouldn’t call the police for help. The police catch protesters, regardless of whether they have been beaten by triad members or have beaten people. Once, one taxi driver hit protesters, causing several injuries. The police only caught the protesters hit by the taxi and prosecuted them, while the taxi driver was rewarded.
How safe is Hong Kong for tourists right now? Would you recommend tourists come to Hong Kong anyway since flight and hotel prices are at a low?
Unless you have frontline war experience, I don’t think you should come. We local people understand where is safe and where is not because we read updates from local channels quite often. Tourists love to go to Central, Admiralty, Tsim Sha Tsui—places which, I think, are extremely dangerous.
Shops and the MTR have also been closing very early ever since the emergency law was enacted. Most shopping malls and shops close before 9pm on weekdays. For weekends, if there is a protest, shops are all closed in the area.
What in Hong Kong has not been affected by the protests?
People still need to go to work.
Lastly, is there anything you would like the world to know about the situation in Hong Kong, while you still can, in case the proposed ban on the internet as suggested by a member of Hong Kong’s executive council does come into effect?
Hong Kong people just ask for justice, like not allowing policemen to beat and kill people randomly. People cannot be extradited to China. I don’t understand why the government doesn’t listen and even asks the police to beat people more. What I see now is: the more the government suppresses, the more violent the protesters are.
20th straight weekend of protests, October 2019.
Wing is presently working on cooking and running because those things make her feel relaxed. (“Reading the news every day makes Hong Kong people tense.”) She hopes to see ‘One Country, Two Systems’—the arrangement that grants Hong Kong autonomy from China until 2047—continue. To send her words of encouragement or share your thoughts on the present situation in Hong Kong, you may use the comment box below.
At age 36, Derek Seong found out his mother had early-stage breast cancer. Barely two months later, she was gone, but not because of the cancer. We had a chat with the now 39-year-old, still grieving Artistic Director to find out what went wrong with his mother’s treatment process and how he managed to make it through those difficult days.
“Not even the doctors, whom we trusted, were able to provide us with a good reason for how and why my mum suddenly got infected by a virus and died within 48 hours of being admitted to hospital.”
Q: Hi Derek, thanks for coming on to share your story. You said your mum had cancer before she died? What form of cancer did she have? Can you tell us what you know about it now?
A: My mother was diagnosed with early-stage cancer after an ultrasound scan and biopsy had been done on her right breast. Confirmation of Stage 1 cancer on her right breast was made after a CT Scan and nuclear x-ray.
How did your mum discover she had cancer? Were there any signs and symptoms of the disease beforehand?
She felt uncomfortable and had small lumps around her breast area. There wasn’t much pain, just discomfort.
How did your mum decide which treatment options to go with? What part did you or the rest of your family play in those decisions?
There wasn’t much hesitation. We prayed for it not to be breast cancer and sought an appointment with the hospital straight away for a check-up. We often meet for family dinners so my siblings and I recommended she go straight for a check-up.
Did the treatments work? Which form of treatment worked the best, and which didn’t work?
Removal of her right breast was done at Khoo Teck Puat Hospital by Dr Germaine Xu. Further tests showed no spread of cancer cells to lymph or other body parts. The only treatment which turned out to be fatal was the side effect of chemotherapy.
What was your routine like when your mum was battling cancer?
It was during the CNY [Chinese New Year] period. But we took it positively, knowing that the cancer was only at an early stage. My wife was expecting twins, hence I had to juggle my schedule between work, mum’s appointments, wife’s appointments and others. It was tough, but I managed to handle it.
“Mum’s 60 years in 2010.”
What was your routine in the weeks following her demise?
It was madness. My jobs require me to smile and provide entertainment to commercial clients. When I’m teaching, I have to maintain the right attitude. I had no time to be upset and I really needed to stay as and be the pillar of the family. And my wife was days to being due.
How did you spend your weekends when she was still battling cancer, and later in the weeks after she passed on?
I spent 8-12 hours teaching and doing rehearsals during the weekends. I was usually around, with my mum, during weekdays and at dinner time during the weekends. [Later on,] I was busy with clearing and packing my mum’s stuff. At the same time, setting up my baby room and busy with preparing to receive my twins. The mix of emotions almost got me crazy.
How long after her death was it before you felt like you were able to function ‘normally’ again?
I’m still not functioning normally. I doubt I will ever be.
How long after her death was it before you felt like you were no longer grieving or intensely sad about her passing?
I am still grieving. It was only recently that I’m not that intensely sad. My mum’s case is still not justified. I can’t be peaceful till then.
Derek (middle) and family at his wedding in 2011.
What advice do you have for people whose parents have been diagnosed with cancer?
Seek the best, correct method of treatment. Have a proper discussion, research and seek proper advice from experts and families who have gone through those processes. One should have several considerations before seeking “Doctors” for treatment. Some parents may be too old to handle treatment. Might as well let them enjoy themselves and fulfil the dreams they always desired for.
Can you map out a recommended path for people whose parents have only just been diagnosed with cancer to follow?
1 – Identify the illness and do your own research. 2 – Seek advice from friends/relatives who have good knowledge about that particular cancer before going straight to doctors. 3 – Take into consideration the age of your parents. Can they handle the medicines, side effects, etc? 4 – Always listen to a second opinion and do not be embarrassed about asking questions. It’s the life of your parents we are talking about. 5 – Seeking treatments, or not, from a hospital is as good as taking a gamble. Take calculated risk. Choose the lower risk.
What are the key things/people/situations that enabled you to get through the uncertainties and difficulties during your mum’s fight with cancer, in your opinion?
The bonding of our family and the support from my friends, wife and even my clients. I consider myself “lucky” in the sense that through my years of hardship growing up, I had become a very strong-minded person who wouldn’t submit to defeats and failure easily. I pick myself up without the need for encouragement by others.
Secondly, I’m the eldest son. Not the eldest child but being the man of the house, I ought to be strong and be able to provide encouragement and strength for my family.
How did seeing what your mum went through and losing her at the end of it all change you as a person? Or did it not change you? Why?
My mum’s departure was very sudden. Not even the doctors, whom we trusted, were able to provide us with a good reason for how and why my mum suddenly got infected by a virus and died within 48 hours of being admitted to hospital. Her initial report stated death due to unnatural causes. We are still having a case with the hospital by the way.
And with these, her departure was a big blow to me and my family. All these years, I had been working so hard to provide her with a good, relaxing life. She was the reason why I had been constantly improving. I don’t have much friends to share my thoughts; besides my wife, she was my next listening ear. I would call and chat with her in between all my breaks or while I was driving.
I felt like an orphan, lost and lonely (my father left us for another family long, long ago), thinking ‘what should I do then’ and ‘why do I still need to work hard’? But of course, I still have many reasons to continue fighting. I have my wife, my twins and my siblings to take care of.
I have become even stronger than before and value family bonding even more, which [I have expressed], over the years, through doing talks, shows and conducting classes with youngsters about cancer awareness and the importance of having good family relationships.
Derek (left) with his mum when he went away for his very first overseas project in 2015.
If you could go back and replay the time you had with your mum all over again, what would you do differently?
With regards to myself, I would have made sure I never made her worried. I would rather earn lesser money but spend all my time with her. Even though we were always together, I still feel it hadn’t been enough. And I will not have sent her for chemotherapy.
I want to see her grow old, with white hair, and I want to feed her when she can’t [feed herself] and I want to carry her when she can’t walk. Like what she did for me when I was a child.
What was your mum’s role in your life when you were a child? What about when you were a teenager and later a young adult? How did her role in your life change at every decade? Or did it not change?
She was my everything. I loved her from a young age. Although we were very poor, I never felt sad. I was happy and I felt that I had more than what I deserved.
My father is a very bad person. She had to take care of the five of us all by herself. Her life was miserable—she was adopted and she worked very hard to feed us and nurture us because our father didn’t care, and even beat her. Yet my mum was very forgiving—always reminding us not to hate our father.
She’s my angel, the kindest soul, and she is a person I wouldn’t do anything to hurt. [Because of her], I told myself to be a good person, kind and be helpful to others. She never stopped me from doing anything I liked. All these factors resulted in my success, the stories I have to tell and my character. Without my mum, I’m nothing.
Which major event in your mum’s life made her who she is, in your opinion? Why do you think so?
Maybe because she was not given much from a young age, she was happy with all that she earned and she was happy to share what she had with others. Because she had little, she valued everything, [and always] remembered and appreciated all those who aided her. And of course, having an useless husband, she had to be strong.
Which 3 objects/people in your life can you presently not live without and why?
My siblings. My wife and kids. My students. They are the only reasons I have now to work and stay alive.
Of all the objects you bought when caring for your mum when she was dealing with cancer, which was the most useful? Why?
I wouldn’t consider it a ‘bought’; it was more of guiding her to use the voice record [function on her phone], [teaching her to] take videos to share, use Facetime and [engage in] gaming—which brought her closer to her grandchildren. And she was happy seeing us via Facetime instead of [merely as] voices when we were not with her.
My wife even taught her Facebook, which she became a big fan of and started making/finding friends.
Derek’s last photo with his mother. Taken in 2016.
Which person do you wish LUCK-IT would interview for you to learn from? Why?
Those doctors who are responsible for her death and someone who can seek justice for us.
Lastly, what is the worst advice you’ve been given, or have heard people giving, with regards to cancer? And what’s the best?
The worst advice I was given was telling people to trust doctors “completely”. The best was to seek different opinions first before jumping into conclusions.
Derek is presently constantly busy with teaching at the dance company he is Artistic Director of, and also with all aspects of the new events company he has only just started. You may chat with him about the above topic using the comment box below, or by reaching out to him on his website, www.dancescapesg.weebly.com.
Photographs courtesy and copyright of Derek Seong. Interviewer: Sy If you found this article useful:
At 51 years of age, Yen-Lu Chow was an entrepreneur and an angel investor… then he lost his son to suicide. Now 61 and on an ongoing journey to heal himself and the world, this social innovator, philanthropist, advisor, mentor, and seeker of Truth shares with LUCK-IT memories of his son, Lawrance, and all the lessons he’s gleaned from grief, suffering, re-calibrating and recovery.
“I had a tough time getting out of the house. I didn’t shave for months.”
Q: Hi Yen-Lu, thank you for agreeing to share your story with us. How did you find out your son had passed away? What were you doing right before that and what did you do right after that?
A: We got a call from Murdoch University in Perth, Australia where our son was attending school—from the Director of International Student Affairs. It was late in the evening—almost 10:30pm. My wife and I had just returned home from tennis (we used to play a lot of tennis together as a family).
How did you feel when you first heard the news? What about at the funeral and in the days after that?
It was a parent’s worst nightmare. After receiving the call from school, and having to take the overnight flight from Singapore to Perth, Australia, it was the longest flight ever. It felt like eternity. We were hoping somehow that the police, the school, God, had made a mistake—hoping that it wasn’t him. We had to go to the police coroner’s office to identify him. We came face to face with our dreaded fate. Our hearts were broken into a million pieces.
The days and weeks and months after were the most difficult times of our lives. We were thrown into the deepest and darkest abyss—worse than hell. We were in purgatory.
Yen-Lu’s son, Lawrance (extreme right), with Murdoch University teammates when they won Gold at the Pan Austria Tennis Competition, in the year he passed away.
You’ve said in other interviews that the days after your son’s death was the darkest time for both you and your wife—can you share how long those dark days lasted? How long did it take you, after his death, to be able to see the littlest bit of light again?
The first 6 months to a year was very, very tough.
What was the turning point/life-changing course of action that helped you see that little bit of light again, you think?
Fairly early on, we realised that perhaps we are not alone—that he was not alone—that there are likely many other young people who have suffered or are suffering from depression or other forms of mental health issues. And we wanted to do something about it. This was that first glimmer of light—it provided a path to move us forward. So rather than focusing on our own grief, pain, sorrow, and suffering, we decided that we would instead try to focus on others’ pain and suffering—and to alleviate their suffering. This was the beginning of our transformation. And this was what our son would have wanted.
What was your routine like during those darkest days?
I had a tough time getting out of the house. I didn’t shave for months. I was wearing my son’s shirts a lot during that time. I still do to some extent.
I also spent a lot of time trying to remember him—all the good things about him and the good times we had as a family, writing a tribute to him with scenic pictures of the family traveling together, a memorial video, etc, also seeking help from friends and healers.
What about now? What is your present routine like?
I spend most of my time these days working on my family foundation—I’ve founded/co-founded a number of nonprofit social initiatives (Akaraka, Over-The-Rainbow, Singapore Creations, YSI SEA, Asia Institute of Mentoring, Made of Brilliance, etc) to help other kids, young people and their families.
Yen-Lu and son, Lawrance, vacationing in Mexico in 1993.
How do you presently spend your weekends?
I do a lot of reading and spending time with friends. We also hold a lot of our workshops, talks and events on weekends—to bring more well-being and hope to others.
What advice do you have for parents who’ve only just lost their child to suicide?
We came across many and have supported many parents on this journey of grieving and recovery.
They need emotional and social support and we try to be there for them. Letting them know that it’s going to be a long journey back—to take time to grieve—also letting them know that things will get better, that the sun will rise again—but will take time—that they need to take care of themselves and the rest of the family first. More importantly, to know that their child will always be with them. We carry our son in our heart.
Yen-Lu and son at the Singapore Botanical Gardens in 1998.
Can you map out a recommended path to coping for parents who’ve only just lost a child to suicide to follow?
What was crucial for our coping and recovery: Rather than heaping blame on ourselves and on each other—to ponder what should have been and what might have been—how we could have done things differently—regrets—which were easy to do during those dark times—and which would have brought us to an even darker place—we decided to support each other—and to focus our attention to help others. This was key for us to begin the healing process.
It’s also been an ongoing journey to search for new meaning and purpose in life. These days it is manifested largely through the work of our family foundation and many other social initiatives I get involved in—to discover our true self—to connect to our Higher Self—and to find our common humanity.
What key things/people/situations enabled you to get through losing a child to suicide, in your opinion?
Unconditional support of friends and family is crucial. Also see above.
How did seeing all that your son went through and losing him at the end of it all change you as a person? Or did it not change you? Why?
Life is precious—yet fragile. Life is short. We have to be grateful for all the gifts that we’ve been given in life.
If you could go back and replay the time you had with your son all over again, what would you do differently?
I think I would tell him I love him a lot more often.
Yen-Lu and family in Taiwan in 2007.
What was your son like as a child? What about as a teenager and later a young adult? How did he change at every decade? Or did he not change?
When our son was alive (he was ill at the time), he once told us: “Wouldn’t it be nice if we could make a difference in someone’s life?”
His life, his passing, his legacy became our inspiration, and the genesis for our family foundation and Over-The-Rainbow.
He was a shy but a great kid—and as perfect a son as any parent could wish for. He has the most wonderful hobbies, and the most kind and gentle personality.
He was an avid reader starting at a young age; he loved being read to as a young child, especially at bedtime. He loved animals as well. Lawrance was born with music in his veins: he started piano lessons at a tender age of 5 ½ years, and after years of practice—became quite a proficient pianist; he sang in a children’s choir that performed in public during Christmas holidays; as a pre-teen he picked up clarinet, and thru his interest and dedication, he was selected and performed as the first-chair clarinet for the school concert band, at the Singapore American School; in later years, he taught himself acoustic guitar, and was able to play some pops and other selected tunes. He owned two iPods and an iPod Shuffle, and literally took his music with him everywhere. He also loves sharing music with others, and with his guitar.
He also got into sports at a young age: he started learning baseball when he was 4 or 5 years, playing catch with Dad. He grew up with baseball, playing T-ball later on in the little league. He also played basketball, with dad initially, and then participated in the youth basketball leagues. He enjoyed playing American football with Dad. Later on as a teenager, he caught on to tennis and went on to play for the varsity team at SAS, varsity team at Fordham University, and was on the Murdoch University tennis team that won the gold medal at the 2009 Pan-Australia Uni-Game competition. And due to Mom’s strong influence and passion for yoga, he picked up yoga in the last couple of years. He started practicing yoga quite regularly.
Which event in your son’s life set in motion his struggle with depression, you think? Or was that brought about by more than just a single event?
It’s both nature and nurture. I don’t talk about this much—but my Mom had severe depression when she was raising us. It’s just in those days, no one talked about it. She had to live with it her entire life. I also experienced depression as a young man that went well into adulthood.
The stress of growing as a teenager and later academic stress were other triggers.
Which 3 objects/people could you not live without right after losing your son? Why?
Not sure how to answer this question. I look at life very differently these days. Nothing’s permanent—everything’s temporary—life is change.
Yen-Lu with kids of Singapore Creations—which provides young people with a supportive platform where they can be creative and grow as people—of which he is co-founder and chairman, at the non-profit’s inaugural production.
Of all the objects you bought/received when trying to cope with losing your son, which was the most useful? Why?
I rely on my music a lot. I always have.
What is the worst advice you’ve been given, or have heard people giving, with regards to coping with the loss of a child? And what’s the best?
They think you should “get over it”—but no one ever “gets over” the loss of a child. Late Elizabeth Edwards, an American attorney and health care activist shared so beautifully :
” If you know someone who has lost a child and you are afraid to mention them because you might make them sad by reminding them that they died—you’re not reminding them.
They didn’t forget they died.
What you’re reminding them of is that you remembered that they lived, and that is a great gift.“
Yen-Lu with participants at the “Screwed Up Moment” event—which focused on sharing failure, not achievements, jointly organised by Over-The-Rainbow and the Happiness Initiative.
Yen-Lu now spends most of his days working on several social initiatives (Over-The-Rainbow, Singapore Creations, Young Sustainable Impact SEA, Asia Institute of Mentoring, Made of Brilliance, Climate Conversations, etc) to benefit society. You can find him online in a lot of places (“I’m very active in the social space and also in tech circles.”) or drop him a question using the comment box below.
Photographs courtesy and copyright of Yen-Lu Chow. Interviewer: Sy If you found this article useful:
Juliana had a rash at age 12, for which she was prescribed topical steroids. Over the next eight years, plagued by persistent skin problems, she persisted with using topical steroids all over her body until, when aged 21, she decided to stop. Within a week or two, her skin became completely red and for the next four years after, she was ‘burning’, oozing and shedding from head to toe, to the extent she had to take a year off school. Four years after her ordeal with what the Internet terms ‘Topical Steroid Withdrawal’, Juliana tells LUCK-IT everything she’s learned from the experience and offers coping tips to others going through the same.
“Be reminded that you are stronger than what you believe.”
Q: Hi Juliana! First off, can you tell us what topical steroid withdrawal is and how someone can tell when it’s happening to them?
A: Topical Steroid Withdrawal (TSW) is a cluster of symptoms that happens when you stop using enough topical steroids after using them for prolonged periods of time. Now, just what exactly is ‘prolonged periods of time’? It’s advisable to continuously use topical steroids for not more than 2 weeks, so going by that, anything longer than 2 weeks is too long. Of course, it also depends on the strength of the topical steroids. The stronger you use, the shorter you should use them for. In general, the chances of someone having TSW is greatly increased if they have used it for months on end, and notice their skin worsening despite the usage. It can be hard to tell if it’s happening to yourself because you can never be sure if it’s just your eczema worsening or your skin craving more topical steroids (hence entering TSW unknowingly). I can’t really give a simple answer. The more complete one would require a look into personal history:
1.. Did you use potent topical steroids for more than 1 month continuously? Or weak topical steroids for several months/years? 2.. Has your doctor been prescribing you increasingly potent topical steroids to maintain your skin? 3.. Did you experience worsening of the rash, spreading of the rash, burning, oozing, more dryness than before? 4.. Does your skin worsen the moment you stop applying topical steroids? 5.. Do you feel like you can’t maintain your current skin without the topical steroids?
Actually, as long as your answer for 4 and 5 is a yes, I can say with 90% confidence that your skin is already addicted to topical steroids, and if you’re not applying more frequently, or more potent steroids, you will experience withdrawal symptoms, which is what I lined out in number 3.
Before Juliana went into withdrawal. “21 years old. Taken at a restaurant because why else would I be holding a basket of xiao long bao? This was Crystal Jade at Holland Village (if you really care for the details!) when I was still suppressing my rashes with a lot of steroid creams. It was barely manageable as I remember having a rash underneath my lips that was shedding that day. Still recall the Elomet cream stinging my skin.”
How did you realise you were going through topical steroid withdrawal yourself?
It was after I stopped my 9-day oral steroids treatment. My skin was worsening again and I was shedding, from my body, tiny skin flakes everywhere. My skin was red! My then ex-boyfriend told me I have TSA [Topical Steroid Addiction]. I didn’t believe him because as far as I knew, one can only be addicted to oral steroids, which I had been using very rarely. I googled ‘eczema red skin’ and chanced upon Kelly’s page about red skin syndrome. Her photos were what convinced me I was going through TSW, because we looked the same. Dry, red face. Which is also why I decided to take photos of my skin (even though I really didn’t want to look at them) and post them on my blog!
How did you even start using topical steroids in the first place?
The same as everyone I suppose! A doctor prescribed it to me! It was a general practitioner in the very beginning. I had some rashes, he prescribed it to me. End of story.
How much topical steroids were you using before you ended up with withdrawal, and how regularly were you using it? Were you following your doctor’s instructions when using or did you just use it whenever you felt you needed to?
Let’s just define ‘ended up with withdrawal’ as the point I decided to stop using topical steroids, because I believe my skin already went into withdrawal before I stopped using steroids although I’m not sure when that was exactly! I had been using topical steroids since I was 12? I was 21 when I stopped. Initially, I would only use them on the rashy bits, for a few days until they went away. Then repeat when they came back. During the last 5 years of my usage, I was using them twice a day, all over my body (because I had rashes almost everywhere). It was betamethasone valerate. I still remember it was quarter strength and half strength. My dermatologist prescribed me TUBS of that. Not tubes, but TUBS! Strangely, my doctor didn’t give me much instructions other than to “use them when itchy”. So I did use them every day because I itched every day. Also the rashes never really went away, so I gotta keep applying until they do, right? When I did withdraw from topical steroids, and was crying to a dermatologist at the NSC [National Skin Centre in Singapore] hoping to get them to diagnose my skin as a TSW case, she told me to “use the topical steroids every day until the skin clears up”. self-censored expletive
How long did it take for you to recover from topical steroid withdrawal? Did the condition affect your life in any way? If so, how?
I’ve quit topical steroids for 8 years now. It took me 2 years to heal from the worst flare. And then throughout the other years, I continue to deal with relatively minor flares. I feel like I never truly healed from my eczema, so I’m still working on that!
TSW left me quite debilitated at that time. I went from social butterfly to hermit. I couldn’t function normally as I was exhausted (from not being able to fall asleep at night) and couldn’t perform well at school. I had to take a year off school in fact. I even stopped watching TV in the living room because I didn’t want to leave a pile of skin there. I spent all my time in my room. I lost all self-esteem and confidence, got depressed, but not depressed enough to shut myself out from my friends completely. I also had thoughts of dying but I couldn’t bring myself to do that to my family. I felt like a constant burden to them, but it’s also this thought that makes me want to do anything I can for them right now.
Juliana’s feet, 7 months into withdrawal.“In 2011. 22 years old. Taken at home because I really didn’t wanna be in the outside world anymore. Skin was REALLLLLLY bad. My skin got to the worst stage around month 7. It was a gradual worsening. Imagine how hopeless I was. 7 months in and it was just the beginning.”
How did you finally get over topical steroid withdrawal? What was the turning point/course of action that got you there?
For me, it was Traditional Chinese Medicine (TCM). As I had to return to school after my gap year, I wanted a little help from someone experienced at treating skin conditions. I was really glad it worked for me, as it helped me go from 80% to 99% healed. Of course, I got complacent and stopped treatment 1 year in, and started adopting my previous unhealthy (but very fun) living habits. I guess the saying is true: live fast, die young. Or in this case: live fast, bad skin.
Did the process of going through topical steroid withdrawal heal your eczema too, you think?
Overall, it’s a ‘no’. I still have my underlying eczema that has been unresolved for too many years. It did get a lot better, like almost unnoticeable during my first stint of TCM back in 2013, but apparently the problem’s still not fixed! Especially when I went back to my old ways of partying and drinking.
What was your routine like during your worst phases of topical steroid withdrawal? How did you care for your skin, self and surroundings?
Oh my, the routine is depressing. I’d wake up around 8am, staring at the window as the sky brightened. I’d wish for the night to come faster because I didn’t want the light to show me how bad my skin was. I wanted to sleep my day away so I wouldn’t have to move or see much. When I finally felt too dry from spending too much time immobile in bed, I’d get up for a shower. I still remember I had to mentally prepare myself for the pain I’d experience when the water first hit me. I would spend 20 minutes just having water run over me—the only time I would feel rather normal again because my skin would no longer be dry and tight. But I knew after leaving the shower, I’d have to experience the dryness all over again. It is like going to heaven then going straight to hell, falling double the distance. I’d then sit in front of a fan to dry myself out, apply dollops of vaseline (when my skin could tolerate it. Otherwise I would just slowly let it dry up and turn into Groot? I imagine this is how he feels.) and enjoy the remaining bits of flexibility and elasticity in my skin. I think I spent too much time picking on my skin. I just hated how rough it felt when I ran my hands across my skin. Lots of scratching and rubbing later on to soothe the tingling and itch. I’d eat, drown myself out with TV shows because that was the only thing I could do that didn’t require my hands (as I needed them to scratchy scratch). Nightfall, I’d feel happier then head to bed hoping to fall asleep, but it would always take me a few hours as I would be tingling. When I was oozing, I had to pad those areas with cotton pad to prevent it seeping into my sheets too. I had to sleep in certain positions to limit contact with the bed. Still have no idea how I survived those days, other than the fact that the human body is a lot more resilient than you’d think.
I didn’t really care much for my skin and self back then. I really should have spent the time reading books good for my soul and mental state. Nothing I did seemed to help with the skin anyway, and creams were a big no-no during the worst as it stung so it was really just showering twice (with just water) and trying to keep my surroundings as clean as possible (thank god for my mom as she cleaned my room for me).
Now that you’re much better, what is your routine like? Do you do anything special to keep the topical steroid withdrawal flares or eczema at bay?
I can fall asleep around 11pm and wake up at 6am for work 🙂 I CAN WORK NOW! In fact I can do many things which I used to be able to do before TSW. I only shower once a day now! A HUGE improvement because my skin feels less dry now. I use creams to keep the dryness at bay, I really like Cetaphil Restoraderm cream as it contains a good blend of ceramides and niacinamide which restores the skin barrier and calms it down. It’s not too oily so it doesn’t leave my skin sticky. I’ve also switched to Avene products for facial skin care because they don’t irritate my skin! They keep my skin moisturised and supple most of the time, unless I have another tiny tiny flare (like real tiny, because it’s only 2 rashes on my cheeks) then the skin does its thing and goes through the red/itchy/dry/shedding cycle. Can’t say it prevents a flare from happening because I still have flares, especially before my period!!! But these are the things I find to not sting my skin even when it’s acting up.
How do you presently spend your weekends?
This question makes me guilty, because it’s kinda like how I spent it last time during TSW… at home and in front of my computer. BUT, on top of that, I cook, I do my laundry, I clean my room, I play games with my boyfriend, and occasionally, I go out for a hike or spend it with family. Okay, spelling those out makes me feel like I didn’t really waste my good skin time 🙂
“Take it one day at a time.”
What advice do you have for someone going through topical steroid withdrawal too?
Be mentally prepared for the shitty days you’re about to face, it really tests your sanity. If I can make it through, so can you. If it helps, visit my skin blog for some hope. A lot of readers told me it helps them when they read what I had written in the past. Maybe it’s the photos too? I don’t really know. Secondly, be patient. “Take it one day at a time” should be the tagline for TSW! Be reminded that you are stronger than what you believe. Lastly, if you see a lot of yellowish pustules that resemble pus (they have the milky yellow colour, unlike interstitial fluid that is yellow but a clear fluid), visit the doctor for a possible infection. You’d need antibiotics for that sh*t.
“Month 7 versus month 25. So that’s 22 vs 24 years old. There’s a lot more comparison on my blog. Of course, these are outdated by now. The photo on the right was taken in 2013, when I had great success with my first TCM doctor. Skin has since had several other flares.”
Can you map out a recommended path to healing for people going through topical steroid withdrawal to follow?
Stopping topical steroids is the first step. The rest is just a survival response. Seek support from friends and family. The ITSAN [International Topical Steroid Addiction Network] community can help you in the beginning so make sure to head over there for some moral support. But don’t linger because what else do you expect from a bunch of miserable people who are all suffering? Be patient; the worst is yet to come, but once it does, you know you’re half-way through the battle. It can take months just for it to get that bad. It really depends on your body. I notice the healthier you are, the faster you get worse and from there you’ll truly experience the recovery.
What key things/people/situations enabled you to make it through topical steroid withdrawal, in your opinion?
Hands down, my family!!! It wasn’t even myself, because I wasn’t myself back then. I was staying alive for my family because of their love for me. Some of my skin friends weren’t as lucky—their family didn’t support the idea of TSW, and insisted they go back to treatments. I was also very fortunate to have been able to rest at home for the entire year. I didn’t have the kind of financial burden others have. Nor do I have children of my own to support. I just had to make sure I was still breathing.
How did going through topical steroid withdrawal change you as a person? Or did it not change you?
Did TSW affect my life in any way? F*CK YES! It turned my world around, broke me down, built me up and gave me strength I never could imagine having. I never knew at that moment how I could survive the endless cycles of shedding, oozing, and itching but I made it through somehow. I started to appreciate my very supportive family, because if not for them, I couldn’t have made it. I earned that strength, and I use it as a reminder when I feel down in life. It has also given me the power to be more empathetic towards others. We’re all suffering in some way or another; why did I think I was the only one who had it the worst? I’ve learnt to be more kind towards others. So, even though it sucks to have had a few years of my life taken away from me, I think of it as a mental retreat where I learned how to be a better person, and also how to live in harmony with this world, my mind and my body. Also, it has given me a brand new perspective–now I am more appreciative and thankful of everything in life (I felt this the strongest right after I returned to school though as time goes by, I need reminders to remind myself how good I have it right now). Deprivation is the best spice in life!
If you could go back and replay your whole journey of healing from topical steroid withdrawal all over again, what would you do differently?
I would spend those times more productively. I could have read so many books during those times, learned so much more than I could have done. Books have given me some peace of mind, that I’m not wasting my life away because I am gaining something even though all I can do is read. Maybe pick up how to trade as well, so I could have earned some money on the side while being home-bound? Too bad!!!
How much topical steroids did you use as a child? What about as a teenager and a young adult? Have you noticed any patterns between the condition of your skin and your use of topical steroids?
Not much as a child, because when I was just a kid, I was clearly more wise. I refused to use the creams because I didn’t want to dirty my sheets. As a teenager, I got more vain and wanted to get rid of the rashes so of course I started using it more. As my skin got worse, I used more topical steroids. Sometimes I wonder if my increased use of topical steroids worsened my skin too.
Which major event in your life made you who you are, in your opinion? Why do you think so?
I was really lucky as a kid, I never had any huge problems or issues other than minding my grades at school. So as of right now, going through TSW, it has been humbling, and very educational for me, spiritually and mentally. You really have to fall to the lowest possible level in your life in order for you to evaluate what the most important things in life are. When everything is stripped away from you, you realise those are not essential. And from there, the mental world I build is laid on much stronger foundations. It’s weird because I didn’t want TSW to define who I am, yet it contributed a lot to who I am today.
Juliana now. “This was taken last month at home. 29 years old now. FML. Where did time go?”
(about the photo above, cont’d) “If you zoom all the way in, you can still see my neck is atrophied, and slightly rashy. Skin looked really good after my period and has fluctuated along with my hormones and flared a little since that week. So much has happened in one week! My neck is now recovering from a flare [that started] 6 days ago and it has gone through the same old ‘itch -> red -> dry and shedding -> smooth and fragile -> dry again but less red’ cycle. Same with the area around my lips too. Will it end one day? Yes. It just takes a long while because my skin has definitely atrophied and is even more easily irritated than before. Other than that I think I look spectacular in the photo. Only had some concealer underneath my eyes!”
Which 3 objects/people could you not live without when going through topical steroid withdrawal? Why?
My mother, my brother, and vaseline. My mother and brother are super supportive and helpful, and never once complained about my skin and its inconveniences. My mom worked, and had to cook for me and clean my room for me. She did so much for me. As for vaseline, it helped me retain a little elasticity in my skin moments after showering, giving me the ability to move without as much pain and skin tearing.
Of all the objects you bought for coping with the symptoms of topical steroid withdrawal, which has been most useful? Why?
Probably vaseline too, because it’s inexpensive, didn’t irritate (when my skin was better), and gave me some level of relief to function.
Which person do you wish LUCK-IT would interview for you to learn from? Why?
The Dalai Lama, because he contains so much wisdom and joy, I want to learn how to cultivate that too! Especially when life is filled with difficulties and hardship.
What is the worst advice you’ve been given, or have heard people giving, with regards to skin care? And what’s the best?
The worst would be the dermatologist who asked me to apply topical steroids DAILY, ALL OVER MY SKIN. No thanks.
The best would be to leave it alone as much as possible! If it’s not broken, don’t try to fix it.
Juliana is presently a sales and operations executive, working 9-6 for a brand she loves. She works on herself when not at work and of late has been figuring out and dealing with emotional issues. You can read more about her experience with TSW on her blog (although she hasn’t been updating because life has gotten in the way) or ask her to tell you more about it by leaving your questions in the comment box below.
Interviewer’s Note: A couple of years ago, a series of spreading rashes all over my body made me consult three different doctors over five months. All three—one of whom was even a skin specialist—diagnosed and prescribed the same thing: eczema of unknown origin and tubes of increasingly potent topical steroids (the final batch being Clobetasol, the most potent topical steroid of them all). The response of my skin was always the same: better with topical steroid application but way worse the second I stopped applying the creams. It took me many cycles of this to put two and two together but I eventually concluded my worsening skin condition might ironically be linked to the creams the doctors were telling me to apply. I figured I might be allergic to the creams so I stopped all at once and right away ended up house-bound for months when all of my skin immediately erupted in crazy itchy oozing sores that would grow dramatically in size and thickness before crusting over and flaking like snow over time. I was ghastly disfigured, scratching all the time, had insomnia and strange zapping sensations every single night, and I truly believed I was suffering a disease doctors didn’t yet know about. It was then I found Juliana’s blog on the internet, and more from others who looked just like her and myself, and finally realised what might really be going on. I told my doctor (the skin specialist) about what I found but he refused to acknowledge the link between the creams he’d prescribed and my skin condition. In the end, I had only Juliana’s blog and that of others like her to rely on for tips on what to do to feel better and function better. My skin is now back to normal and all I did to get it back was—not consult more doctors but, like Juliana and others said—wait it out and let my body heal itself. And for that information, I am forever grateful.
Photographs courtesy and copyright of Juliana. Interviewer: Sy If you found this article useful:
