Sheryl Chan runs “A Chronic Voice”, a health, wellness and chronic illness blog. She shares her experiences in hope that it raises awareness on silent disabilities, and to let others know they are not alone in this. Here’s a little more on her thoughts about living well with chronic illness.
Managing Illness from a Young Age
Sheryl has antiphospholipid syndrome, Lupus (SLE), Sjögren’s syndrome, epilepsy, a mitral valve repair, PSVT (a heart rhythm disorder), and a few more bits and bobs! Her health issues appeared at a young age and made a dramatic change in how she lived her life.
She suffered a mini stroke at 14 while training under the hot sun. It turned out that she had antiphospholipid syndrome (a blood clotting disorder), and had to start on blood thinners. She remembers bursting into tears when the doctor first told her that she could never play contact sports ever again, as it was a big part of her lifestyle. To a young girl, it felt like the end of the world.
At 17, she suffered multiple DVTs and a near fatal pulmonary embolism (clots in the lung) due to this. It was the most painful period in her life so far. She spent two months in the hospital fighting for her life and couldn’t even lie down due to the excruciating pain. Her illness then mutated (in the words of the doctor!) into Lupus, and everything just went downhill from there.
As things progressed, she experienced haemolytic anaemia from the Lupus, where her red blood cells just kept breaking up, and she was only surviving on half the normal amount of blood. Nothing was working, then she took unpaid leave from work for three months, and her health miraculously improved. This proved to Sheryl how detrimental stress is for her health, to the point of it being the biggest trigger.
How Illness Impacts Your Life
I asked Sheryl how the illness impacts her life now. She told me: “Illness changes your entire life, and changes you as a person. That whole Myers Briggs and personality type stuff – most people think it’s ‘fixed’ and that ‘this represents who I am’, but even this can change depending on how big a hit you take in life. I’m a risk-taker for example, but after you’ve suffered an immense amount of pain, you tend to become risk-averse”.
Sheryl has changed the way she works to accommodate her health. She started freelancing as a web developer, but found it wasn’t that much different from working full time! The amount of work was the same, except she was now working on her own. The only good thing was that she could reject jobs, and work in her pjs! She’s worked from the hospital bed at times noting not all jobs have this ‘benefit’! 🙂
Sheryl finally stopped working when she took a big hit from tuberculosis a couple years ago. She had to take hardcore antibiotics for a year, and while this isn’t too big an impact on the average person, it was taking a huge toll on Sheryl as it was messing up all her regular meds. It doubled the side effects of steroids, which really undid her mentally. It was also triggering her heart rhythm disorder, so she was in and out of hospital every three days. It was extremely distressing and stressful, and she felt a mess at the end of it all.
Stuff that Helps
Having gone through such a traumatic time, I asked Sheryl what things had she had done to help herself during that time.
She got herself some pet birds and told me the emotional support pets provide just by being themselves cannot be underestimated!
Writing has also helped her immensely. In fact, she has always found it helpful (even as a child). She describes writing as her panacea for all ills, finding it always makes her feel better by helping her sort out her thoughts and articulating how she feels. Before the time of mobile phones, she used to bring a notebook and pen to her hospital visits as a teenage girl and write poetry.
She also finds travelling is another excellent way to get out of her own head and realise that it’s a big, beautiful world out there despite it all.
There is Goodness in illness
For Sheryl, getting ill has weeded out all the superficial people from her life. Only the best of humanity remains, so that’s fantastic.
And because of her illnesses, she has found her way back to writing, which is her first love.
She says “Who knows what my life would be like right now if I weren’t sick, maybe still coding in an ad agency, which isn’t fantastic either”.
Advice for Others
Sheryl has a few pieces of advice, most of which she learned the hard way:
- It’s okay to try different things that you think might be helpful, even if they’re completely opposite methods! Some days dealing with pain a certain way helps you, on other days it doesn’t. Just like how our emotions can change, so are the coping methods we can use.
- You know your body best, and if something doesn’t feel right, then something isn’t right. It’s important to work with your doctor, but he or she isn’t always right. They can’t step into your skin to know how you’re feeling exactly.
- Always seek a second, third, fourth, fifth, etc opinion, if you don’t agree with what the doctors are saying. There is usually another way of approaching the problem, one that you can deal with not just physically, but also morally and mentally.
What does the future hold?
Sheryl hopes for more travels and to start her own family (though not so soon unfortunately – her doctor says she is beyond high risk at present) with plenty of kindness and love to go around.
Thanks so much for sharing your story Sheryl (I’m sorry it took me so long to post!). Life has certainly dealt you some big challenges from a young age. How you’ve managed that is quite simply amazing! You can read more about Sheryl and follow her on social media here:
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