Memories of Fibromyalgia
The memory I recall the most vividly from my childhood — the one I think about often, the one that stands out the most — is the dizzy feeling I had at the hospital, as I clutched the stuffed owl I had purchased at the gift shop, wondering what this new diagnosis meant for me. I was told I had Fibromyalgia. I had heard the word before because my mother has it, but I wasn’t quite comfortable pronouncing it yet. It didn’t roll off the tongue the way it does now. They told me that because I had it at such a young age, I might grow out of it one day. Spoiler: I haven’t yet. I was left with a feeling of uncertainty about the future. I had no idea what was ahead. I only knew that I was eleven and already tired. Tired of going from doctor to doctor for answers, tired of not knowing what was wrong with me, and not very comforted by the harsh reality that as grateful as we all were for finally getting a diagnosis, it would not bring me a magical cure for the pain I was in. I just wanted to be a normal kid. And suddenly it seemed less likely I would ever have that.
The diagnosis followed a long period of sleepless nights, lots of physical pain, absences from school, a misdiagnosis of Lyme Disease from a fraud doctor who did no tests and diagnosed EVERY one of his patients with Lyme Disease, a video made by my kind and concerned classmates, and a period of homeschooling that caused me to feel extreme isolation that should not be felt by anyone let alone someone my age. I would go on to learn lessons about life with chronic illness that no young person, or anyone for that matter, should have to. I learned that chronic, invisible pain is sometimes met with an unfair level of skepticism rather than kindness, from peers, friends, teachers, and sometimes even medical professionals. I could be labelled a liar, a faker, a hypochondriac simply for vocalizing the fact that I was in pain. This is a startling, confusing fact that every person suffering from chronic invisible illnesses will learn, but it’s especially hard to deal with at such a young age. And I really wish none of us had to deal with this on top of our already difficult health challenges. It’s baffling to me that as a society, we are not more committed to making life easier for everyone struggling with any kind of chronic illness or disability. I am not naive enough to believe there will ever be a time that chronically ill people & other disabled people will only be met with understanding rather than cruelty and coldness, but I hope someday ableism is so frowned upon that future generations will only encounter it very rarely.