Believe me now?
February 6, 2022
An excellent but unusual article – a man with fibromyalgia talking about not being believed. Unusual because this chronic illness is most often associated with women, but the disbelief that goes along with it has a long history in medicine of women not being believed. Historically, women were more likely consigned to an asylum than receive the correct diagnosis or treatment for diseases such as multiple sclerosis.
Many of the symptoms that Jason describes are the same as my MS symptoms – the unrelenting fatigue, the brain fog, the inability to function, the pain. Also the disbelief. Even though I use a wheelchair and I clearly can’t walk in any functional way, my first neurologist once tried to force me to walk across his office and treatment room – probably 5 or 6 yards. Ian held onto the wheelchair because he knew that it wasn’t going to happen, because maybe I could slide a couple of feet but that was it.
And then, when, shock horror, I couldn’t walk, I was told I needed to see a psychiatrist because it was all in my head. This, from an MS neurologist. I saw a psychiatrist. She laughed and sent me on my way, saying that there was no need for me to be seen by her. With my GP’s support, I got a new neurologist at UBC’s MS Clinic and finally I felt I was believed.
It’s hard to have a disease where one day something works and the next day it doesn’t. You doubt yourself, you wonder if there is something stopping you from doing something, you constantly look for signs one way or the other. You try to do things and often end up hurting yourself – but it was worth the try!
Almost 14 years later, I have a firmer grip on my understanding of my version of the disease. From time to time the doubts persist, but they’re pushed to the background. I take nothing for granted – both the highs and the lows – and just accept that my current right now is today’s reality and I’ll deal with tomorrow when I get to it.