Unseen with an Invisible Illness
The day I was given a diagnosis for FND and a link to a website, my Neurologist said that I should just go figure it out. “It’s not cancer, Miss Ali, it’s up to you how badly you want to get better.” The diagnosis gave me a label, one that wasn’t taken seriously. It left me with more questions than answers. A year later I was also diagnosed with Fibromyalgia and Myalgic Encephalomyelitis also known as M.E. A broken brain and nervous system, a few chronic conditions to the table, what a life.
Photo by Pâmela Lima on Unsplash
There wasn’t a pathway to help with treatment, apart from going round and round in circles with unsolicited advice I did give up. And although it is tough to admit at times, even say out loud. I can hopefully continue to write about it though. Since receiving brain treatment, I have looked into triggers. I won’t go into every single one, there may be a book for that one day, someday. Looking back, tot being seen, feeling voiceless and suppressing emotions had a huge impact. The involuntary movement, the non-epileptic seizures, the drop attacks felt like a part of me wanting to be heard. Maybe it was my brain telling my nervous system that I wasn’t listening to my body. I needed to rest, and I didn’t. I would constantly burn out and when I eventually became bed-ridden no one believed me.
“Just get up Shehla.”
“Why are you making this up?”
“It must be in your head.”
“Just be more positive.”
“It’s just anxiety.”
Once I began fighting for treatment, the right to be seen by a medical team, specialists and be put on waiting lists even if they were more than two years. I repeated myself often, and consistently. I began building documents, evidence, videos, photographs and raising awareness. The odd “oh get over it” comment, “it’s not even that serious”. “Maybe you should go and unalive yourself then.” There were times I just thought about what am I fighting for, I spend money, time and all my energy to survive and for what? Constantly compromising the joy of life. A yes to myself, is a no to everyone and everything else in society apart from the days when it’s a green day, and it feels worth it. Those couple of hours the old Shehla visits, the enthusiasm, hopes and dreams. They shut down now and again because of how debilitating these conditions are. A relapse and the bedridden version of me envies the old me but the old me got me here in some respects.
There were times I would just sit and stare at my walls hoping the symptoms would fade away: “They’re your friends Shehla, they’re trying to tell you something. Are you listening.” Said one specialist. Friend? It was a friend that was hurting me physically and mentally. I was trying to escape this, looking for shortcuts and constantly looking for answers whilst being exhausted. The desperation was there to get better. But I was met with awkward silences, ignored by messages, phone calls put down on me and everything else.
Written by: Shehla Ali