Sheryl Chan of A Chronic Voice

This is Sheryl, and she looks like your average human being. You’d probably not give a second glance should your paths cross on the street. Sheryl lives in Singapore.

But, as she puts it, her body is in a bit of a mess. She is living with multiple invisible illnesses including autoimmune arthritis Lupus.

“I have had a mini stroke at 14, multiple blood clots in the lungs and legs, a faulty heart rhythm, a gore-tex band for a heart valve, seizures, scars all over my body from various surgeries, and have never had a break from Lupus in over a decade, just to name a few.”

Sheryl shares her experiences in hope to reach out to those who are suffering to let them know that it is okay to feel depressed, sad or frustrated. Let us simply get through it together one day at a time, and if need be, one second at a time .

Her blog aims to raise awareness about lifelong illnesses from various perspectives. Every patient, illness and how they experience pain is different. There is no single technique or approach to managing these symptoms, but every tool in the toolbox helps. I also want to encourage empathy amongst all facets of society and not just within healthcare.

She is an inspiration.

What disease/conditions do you have?

Antiphospholipid Syndrome
Lupus (SLE)
Sjögren’s Syndrome
Epilepsy
PSVT (a heart rhythm disorder)
A repaired mitral valve
Clinical depression & anxiety

How were you diagnosed?

I had a mini stroke at 14 whilst doing physical training in school under the hot sun. My friend accompanied me as I dragged my half numb body to the GP. He referred me to a neurologist and a few months later, I was diagnosed with Antiphospholipid Syndrome. The other illnesses mutated and evolved one after the other after I had a near death systemic blood clotting episode at 17.

What are the treatments?
Medications – steroids, immunosuppressants, blood thinners, benzodiazepines, beta-blockers, mood stabilisers, vitamins, etc. They manage but don’t kill the pain entirely.

Have you had any adverse reactions to medications or treatments?
Yes, I developed a sensitivity to paracetamol (acetaminophen) after taking it without problem for years. Now my mouth feels like it’s on fire when I take them so I need to take tramadol instead.

I’m also allergic to rituximab, a monoclonal antibody used to treat certain cancers, too. This one’s pretty severe as I go into anaphylactic shock.

Can you explain a time a doctor/health professional did not help you?
Ha, plenty. The latest episode was when I got
rejected by the Emergency Department at Singapore General Hospital. Yes, a hospital’s ED department rejected a patient who was struggling with a life and death scenario. They said I was too unstable to be transferred from the hospital I was in, which didn’t have the necessary specialty (gynaecology) to care for me.

Can you explain a time when a doctor/health professional did help you?

Plenty of times, too. My rheumatologist is seen as a stern man, but he’s always taken excellent care of me. He answers all my questions properly, and I always feel like I’m in good hands. It isn’t so much a single thing he’s done for me, but the general care given as a doctor and as a human being.

What would you say to yourself if you could go back to when you were freshly diagnosed?
Take your bloody meds properly! I used to skip doses because APS doesn’t really cause pain. That’s how it led to the multiple blood clotting episode, which changed the rest of my life forever.

What advice would you give to someone else with your condition that has just been diagnosed?
Take your bloody meds properly! And to read this article on my blog because there’s hardly any information from a patient’s perspective and experience out there. This article is a summary of all you need to know to start with. It’s one of the top five articles on my blog, strangely. I am assuming it’s because it’s such a rare disease, and there’s so little information out there about it.

What life lessons did your diagnosis teach you?
Lots! I’ve learned how to ask for help and that it’s not a weakness. I’ve learned to be extremely comfortable in my own skin and body. I’ve learned humility, and also
how amazing our bodies really are. I’ve learned lots of medical knowledge with all the research and investigations I’ve had to do. I’ve learned what it means to be human, and what it means to be heart-broken because not everyone can handle the harsher realities of life. I haven’t really learned how to pace myself…

What lifestyle changes have you had to adapt?
Just about everything. I used to be a crammer, a go-getter. Now I need to spread it all out and it’s frustrating. I need to limit my appointments or activities to just one or two things on a daily basis. Every day is a fine, balancing act that’s no fun.

Are there any stigmas or misconceptions surrounding your illness?

Too many too count, especially when it comes to mental issues. People tend to assume that all you need to do is think positive. That works when you’re feeling down, but not in real depression.

Also, being or looking young doesn’t help, even though yes I like looking young 😉 People in public, especially older folks, treat you like a criminal when you’re moving too slowly, blocking their way, taking up a disabled seat or bathroom, etc.

Do you have an example of when your illness was invisible to someone else?

Usually this happens in public, where old people shoo or reprimand me (respect of the elderly is important in Asian culture). Once a taxi driver told me I was lying about my illnesses because I was too young to be that sick.

What keeps you moving forward?

Honestly, nothing. I just ‘be’. This mentality of survival and ‘being’ helps me go through life and cope with pain. Perhaps this quote from Viktor Frankl sums it up: “The point is not what we expect from life, but rather what life expects from us”. You can also read this post I wrote if you’d like to understand more: I Have No Purpose in Life, and Therein Lies My Purpose.

Have you had any surgeries or long periods in the hospital?
The longest, most painful bout was two months,
when I had those clots at 17. Apart from that I’ve lost count of the number of surgeries and times I’ve been in and out of the hospital. It’s like a second home that regenerates me back to health, but that I also hate being in.

What kind of help have you reached out for?
All sorts – financial, physical, emotional, mental. The biggest financially was a fundraiser when I was 25, because I needed USD100,000 to get a heart valve repaired in the U.S. People rallied around that and were amazing.

My ex was always supportive, which has taught me how to ask for help physically and emotionally. Physical is fairly easy – people don’t mind and it’s hardly any effort on their part. ‘Open this bottle’, ‘pass me the cutlery’, ‘pick this up please’ – it’s easy for them, less easy for me, so I just ask.

Mental help I needed and still need from professionals. I’ve seen a psychologist and am still under the care of a psychiatrist. Both play different roles and helped so much, in terms of coping with my illness, and dealing with issues that were inherent in me.

Was there anything you had to give up because of your condition(s)?
Too many to count. I’d be a different person in another life. I’ve had to give up the sort of sports I enjoy, foods that I like eating, travel becomes much more risky (I love going to remote corners of the earth), my independence, my career, relationships, my ego.

What is the most annoying thing people say to you about your condition?
“It could always be worse”. Yes of course, but it can always be better, too. And unbearable pain right here, right now, is all that matters. It’s enough to break you permanently.

Does your physical condition effect your mental health at all and how?
Definitely. The steroids I take play a huge role – they make me crazy anxious to the point where I can’t sleep and pace around like a mad woman all night. But when you live with pain day in and out for decades, this also takes a mental toll as our bodies do not work as separate entities but one. Physical pain hurts your mental health and self-esteem, and this feeds back as physical pain in a vicious cycle.

How do you advocate your condition?
I blog about it, and also try to share as many other blogs and health resources on chronic illnesses as I can on social media. I’m not really a face-to-face, events, or networking kind of person. They drain my energy quickly, so I stick to what I like the most and think I do best.

How did your condition change you?
I’ve become so much more cautious and less easy-going or spontaneous as a person. Even if I want to I can’t, or I will pay the price for it later. It’s forced me to be less adventurous, but also more empathetic and hopefully, a little wiser. The sort of guys I’d be dating if I weren’t ill would be very different, I think.

What do you want others to understand about your condition?

That they will never go away, that they’re horrendously painful and expensive, and that I would be a totally different person if not for them. But also that it’s okay to bring them up in conversation – I’m always happy to share. It’s a normal part of my life, and should be included in conversations just like any other topic.

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