Sheryl Chan is the writer behind A Chronic Voice, a blog that aims to articulate lifelong illnesses through various perspectives. She herself lives with multiple diagnoses, which include autoimmune disorder antiphospholipid syndrome, Sjögren's syndrome, epilepsy, lupus (SLE) and more. Beginning with a mini stroke at the age of 14, Sheryl’s experience was followed by multiple blood clots in the lungs and legs, a gore-tex band for a heart valve (she then developed PSVT — paroxysmal supra ventricular tachycardia — after this mitral valve repair in 2011), seizures, scars from various surgeries, and ongoing chronic pain associated with lupus. She’s been in out and out of hospital rooms for so long, she knows what it’s like to face mortality and to battle the mental health after-effects of such critical situations. One thing Sheryl truly works to destigmatize is mental health — from depression to anxiety and everything in between, she hopes that by sharing her experiences, she can share that it’s OK…to not be OK. As she says, “Let us simply get through it together one day at a time…and if need be, one second at a time. I can, I can, I can. That’s three seconds down.”
Tune in as Sheryl shares:
- that she had a mild stroke at 14, at which point blood clotting disorder antiphospholipid syndrome (APS) was diagnosed
- that she has to take blood thinners daily in order to prevent clotting
- that APS is usually diagnosed in late-stage pregnancy, as it can cause miscarriage — so Sheryl was unusual in that her case was diagnosed sooner
- that at 17, she had her first brush with death when she suffered a massive blood clot in her lung — and a doctor didn’t take her seriously at first
- that because the episode with APS at 17 was so severe, it likely triggered the genes for lupus, Sjögren’s, and more
- that her second brush with death came at 25, when one of her heart valves prolapsed
- that she raised funds ($100K USD) to have her prolapsed valve repaired at the Cleveland Clinic with minimally-invasive techniques
- that because of her experiences, she is no longer afraid of death
- how she is constantly balancing her mental health and chronic pain
- how she’s become her own advocate, and become skilled at firing doctors who aren’t working with her
- that her medications cost $1-2K/month, despite a chronic illness payment scheme
- that pain is often not the worst part of chronic illness: isolation and fatigue can be just as difficult to deal with
- that mental health issues come along with all chronic illnesses at some point — and need to be taken care of from diagnosis. Sheryl recommends adding a therapist to your medical team ASAP
- why it’s important for all your doctors to work with you, and be open to communicating as a team
- why it’s important to trust yourself and your own knowledge of our body
- why it’s important to ask for help and seek community
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