My partner and I were talking today about people’s opinions when it came to disability. Talk of how law should change to reflect and encompass what it means to be ‘differently abled’ and how that affects how you’re seen to others. Most importantly how you’re seen to those who aren’t walking a mile in your shoes.
Since I was diagnosed, around two years ago, I struggle(d) to admit that I am disabled. It even feels weird just typing it out, like a weird dose of imposter syndrome mixed up with fumbling around in the dark. Even now, I don’t handle my condition well and it’s a bitter pill to swallow to admit I need help or support (in any size or shape).
As a teenager, I suffered with pain and fatigue. It stemmed from an old injury of a torn ligament, which never seemed to heal despite physio. The pain eventually took hold of my lower half of my body.
I was in and out of my doctors during this, battling with them about exploring my symptoms in detail – to simply be told it was either: hormone changes, growing pains or imagined pain (or a combination). My self-doubt began to creep in and I found myself questioning the slightest ouch of an ache.
It eventually boiled over, when I could barely sit at my desk for work without wanting to cry; and I reluctantly revisited my doctors for answers. My concerns weren’t ignored, like previously, and a blood test was ordered.
The results of which showed some inflammation so I was eventually referred to a rheumatologist; who after a few months and some tests, determined that I had Fibromyalgia.
It’s a condition which causes widespread pain in your muscles, your bones and your nerves. For some, it can have localised pain in areas of your body (for me, it’s mostly from my lower back down to the tip of my toes). Others may experience this all over their body.
Pain is one thing. However, this condition can spread into other symptoms too. Commonly, it can make you feel stiff, fatigued, affect your sleep, give headaches, give you ‘fibro fog’ that makes it hard to concentrate or remember – to name a few.
With all of these symptoms, you may think it’ll send up huge red flags to doctors; a big warning sign that sets off alarms. I wish!
Truth is, it doesn’t. Fibromyalgia is like a chameleon. Symptoms can fluctuate in intensity. Some days are good pain days (the pain and other symptoms may be less severe), others are bad pain days (where it’s more severe and those days it can be harder to leave bed).
It can present in many ways and it took me around thirteen years to get to a point where the balance tipped. I fell down a rabbit hole of blood tests, x-rays and bone scans. All of which came back clear.
That familiar sense of dread came over me. Was I imagining it? I drove myself crazy wondering, but in early May I saw my consultant. I finally received my diagnosis and what should been relief turned into heartbreak.
My entire world fell away from me. I had answers, but it meant I would never get better. There wouldn’t be a morning where I’d wake up with no pain. I wouldn’t go back to life before. There was no reset button to be found.
I swung from one stage of grief to another. First, denial then anger, eventually turning to sadness. I grieved for the person I wouldn’t be or the things/life I wouldn’t have. What’s worse, I felt completely on my own island with it.
How could I change how I felt towards my own disability? Well, it stems from that conversation with my boyfriend. About how people see those with chronic health conditions. I needed to change how I saw myself, how I embraced myself – then I could tackle how people saw me.
Onto the next chapter