If this letter was part of an inspirational movie, I’m sure I would be saying a heartfelt thank you. Dramatic music would play whilst I’d gush about how becoming ill changed my life for the better and helped me discover more about myself as a person, whilst I waltzed off into the sunset with a handsome prince and some kind of small fortune due to a dramatic plot twist.
Unfortunately, this is not an inspirational movie. Instead of waltzing off into the sunset, I manoeuvre an unreliable wheelchair along a questionably uneven pavement. Instead of finding a handsome prince, I concentrate on finding the most qualified medical professionals to manage my condition… with bonus points if they happen to be attractive, of course. And my plot twist isn’t a small fortune: it’s not knowing if, when or how I will ever get better.”
– Excerpt from Dear Chronic Illness complied by Pippa Stacey, Wallace Publishing (2018)
So, here’s the thing. Besides sharing snippets in my charity book, Dear Chronic Illness, never before have I sat down to write about my full chronic illness story. In all honesty, my main reason for holding back in the past has been because of the unavoidable unsolicited advice and judgement these sort of posts can unfortunately spark, but I was also skeptical of there being no real ‘point’… no two people experience chronic illness the same, and I firmly believe that everybody has their own unique path to follow. What could anybody else possibly gain from reading my story?
However, I recently had cause to reflect on my own early years with chronic illness. It would be difficult to forget the confusion, fear and grief during those days, never mind how it felt to discover the lack of information available for patients. Truthfully, one of the things that genuinely helped me make sense of it all was engaging with other people’s blogs and social media posts. Even if our circumstances differed (illness severity, age, geographical location…) reading about others’ experiences played an important role in helping me tentatively figure out the next steps.
So, whilst it’s incredibly important to highlight that my story is my own and not in any way representative of every person with ME/CFS, I’m putting it out there in case it’s in any way helpful. Here’s how it all went down…