Shining The Spotlight On Chronic Illness & Disabilities Q&A With Sheryl

Hello and welcome back to another Shining The Spotlight on Chronic Illness & Disability post. I am so thankful for each and every one of the participants who have shared their chronic illness and disability journey with me and my readers. Today’s post features Sheryl of A Chronic Voice.

Introduce yourself and tell us a bit about you?

Hello, my name is Sheryl and I come from Singapore. I blog over at achronicvoice.com, covering topics on chronic illness, mental health, and general wellness. My aim is to share about life from different perspectives, in order to instill empathy across all facets of society, not only within healthcare.

Chronic illness(es)/disabilities I have?

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

My symptoms/condition began?

At 14 when I had a mini stroke after a hard day of physical training under the sun.

My diagnosis process was?

Fairly straightforward after I got my first appointment, as Antiphospholipid Syndrome can be diagnosed with a blood test. But the Lupus and other illnesses evolved over time, after I had a major PE (clot in the lung) and multiple DVTs where I almost died.

The hardest part of living with my illness/disabilities is?

The unpredictability, because I can never commit to plans for real. I suppose no one really can, but it’s even more unstable when you have a chronic illness. You literally have to wake up and see how you feel, and then make plans for your plans.

People assume that?

People within my age group assume by default that I can keep up with their activity levels, or older people presume I’m fitter or healthier than them, based on my outward appearances. The ones in my age group can’t fathom why I’m so ‘lazy’, and the elderly expect me to give way to them, sometimes getting angry at me for my ‘rudeness’ and ‘disrespect’ towards their ‘right of way by age’.

A typical day for me involves?

Medications, coffee, talking to my birds, some work, blogging…I do admit to spending too much time on my computer 🙂

The one thing I cannot live without is?

My human support system, hands down 🙂 Without them I’d be living a rather miserable life.

Being ill/disabled has taught me?

Many life lessons, you can read some of them on sicklessons.com

But I think the biggest one would be acceptance. Your liberation and power lies within it.

What advice would I give someone recently diagnosed?

Just hang in there, and remember that you are never alone.

My support system is?

Super supportive, and for that I am blessed.

If I had one day symptom/disability free I would?

Hop on a plane and go explore somewhere for a full day!

One positive of having a chronic illness/disability is?

Only the very best of humanity remains in your life.

The spoonie/disability community has been?

There’s the occasional mean person who can

really get you down, but I’d say it’s mostly been an empathetic, supportive community online. It’s always good to know that someone else out there ‘gets it’.

Thank you Sheryl for being part of the Shining The Spotlight series. Be sure to check out Sheryl’s blog

Are you interested in sharing your story by taking part in this series? Drop me an email hello@nicolajogston.com I’d be happy to send you the Q&A and feature your story.