Sometimes, especially in my early 20’s, I prayed for God to exchange my Fibromyalgia for Cancer. Why would I wish for such a thing? The reasons, although numerous, may not fully explain my plea. But I’ll try.
The way I saw it, if I had Cancer then at least people could see my illness. They wouldn’t judge me or assume I was just being dramatic, seeking attention, or trying to get out of previously made plans. If my diagnosis was Cancer there would be a tangible test to prove I had it. Doctors wouldn’t assume I was a hypochondriac and pawn me off to their less experienced colleague.
If I had a well-known illness like Cancer, people would ban together to help me. Someone would offer to take me to the grocery store when the pain was unbearable. Or they’d bring food to me so that I didn’t have to scrape the back of my pantry because my flare up was so bad that I couldn’t drive to the store for a week or more.
If I was going through chemo, maybe someone would want to accompany me to one of my numerous doctors’ appointments and hold my hand. Or maybe someone would wipe away my tears when the neurologist was shoving needles into my back & legs to test my nerve function. (By the way, I found out later that not only were my nerves functioning, they were OVER functioning due to the Fibromyalgia, which made the already painful test excruciatingly agonizing.)
If my treatment course involved Cytoxin or Xolda (common chemo drugs), people wouldn’t think twice when I had to leave a restaurant because the smells were inducing vomit. But for Fibro, when I explain that an anti-epileptic drug is having the same effect, the conversation moves on quickly past my explanation with an eye roll from those across the table.
If I had Cancer, people would notice when I suddenly lost 15 lbs. With Fibro people just kept telling me how lucky I was, and wanted to know which drug I’d taken so they could ask their doctor to prescribe it for them. (No, seriously, several people asked me this!) If I had Cancer, instead of making fun of the fact that I was shivering at the beach when it was 75° out and sunny, they’d offer me a blanket and wrap a friendly arm around me. Instead, when I explain how Fibro makes one sensitive to cold, they’d say “Oh, that sucks,” and go on with their day, leaving me to shiver in the sunshine until they are ready to leave.
If I had Cancer, at least people would see the pain I was in. Their eyes would be open to the way I move, and shift in my seat because the contact between the wood and my skin feels like hot needles poking me. Friends would offer to walk with me, attend yoga with me, and keep me company when bedridden from pain.
Most of all, I wanted to have Cancer instead of Fibromyalgia because there would have been an end in sight. Whether it be remission or death, I would know what would happen. With this illness there is no end in sight, not proven cure or even agreed upon treatment. Doctors wouldn’t be playing a guessing game with drugs, and rolling the dice when ordering tests. There would be a standard of care, and support groups with faces like mine.
But to my great relief, I don’t have Cancer. The Big “C” isn’t my companion. But, wherever I go, I do need room for two. It’s never just me alone, but me and this invisible passenger. It’s like a dreary version of an imaginary friend. Only it’s not imaginary and “he” sure as hell isn’t my friend. I have to explain this passenger to people and hope they believe he’s there, without being able to see his face or shake his hand. Yet, they have to make room for him, whether they can see him or not.
When I wished for this, I was in a very dark and lonely time of my life. But what I hope people can understand about the indefiniteness of this illness, is that dark times are never 100% in the past. The ride rolls on, and its a roller coaster designed with many ups and very many downs. We need to see people for where they are in their lives, in their moment, in their pain. We need to do this even if it makes us uncomfortable in our own skin. And we need to be willing and able to celebrate when their times are bright and pain-free.
This is an illness that makes life choices for many people, choices the rest of the world takes for granted. I hope we can all be aware of that and maybe look twice when someone we know shivers in the sunshine.
-Talia Miele de Troccoli