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What It Feels Like When People Don’t Take Fibromyalgia Seriously

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Fibromyalgia is a serious musculoskeletal pain disorder caused by misfiring of pain signals in the brain. It is an invisible illness. The intense pain brought on by the illness and the mirage of a healthy, so-perceived “normal” person often leads to anxiety and depression. If you are experiencing intense, full-body physical pain and you don’t know why, know that you should take your symptoms seriously even if others don’t.

For the past year, I have been seeking out my formal diagnosis. Lupus, adhesive arachnoiditis and rheumatoid arthritis have recently been ruled out. Right now one contender, the final diagnosis, remains: fibromyalgia. And it hurts. Because having fibromyalgia feels like having imposter syndrome.

On television shows like “Parks and Recreation,” which I once loved, there are jokes that minimize fibromyalgia as a “fake disease.” I once heard one philosophy professor of mine belittle his uncle’s chronic fatigue syndrome, aka myalgic encephalitis, as “just being tired all the time, but of course he is, he’s just old!”

Then there were my friends and loved ones, who either didn’t know what fibromyalgia was and had no idea I wasn’t faking being in pain, but rather thought I experienced extreme anxiety. Many of them expressed disgust at my weight gain and the fact I could no longer walk around a grocery store. All of this made me feel like my illness, my fibromyalgia, had to be something else. It had to be something worse, otherwise these terrible things wouldn’t be happening to me. I had to have more than “just fibromyalgia.” One friend who worked in a lab told me that “fibromyalgia doesn’t do that” and “this must be my fault.”

My fault. Yes, this was all my fault. I felt it in my bones to the point I could scream. And I would cry and scream during the worst of my pain flares that left me in bed. This could not be fibromyalgia, the imposter of chronic illnesses. How could something as fake, as little researched, as as all-in-my-head be fibromyalgia?

If only I had a more positive outlook. That was it. I needed to think clearer and brighter. It was poor medication management. So I went and bought a pill keeper. Should I dare believe I could walk around a grocery store, I could. My 60-year-old mother could.

Then I went to physical therapy. All these things helped me feel better. But there were still those days when I would read the Bible in bed sobbing, knowing I must be a fake because of my fibromyalgia.

Having fibromyalgia was my fault. If it wasn’t, why would I have it? It was a product of a dark mind. The brighter the mind, the lesser the pain.

But I found that wasn’t always true. In my grad school work, the more physical activity I endured the poorer my grades were. So I had to let my husband shoulder more responsibilities around the house. I was a failure as a wife, who as a homemaker’s job was to keep a tidy house.

It was all in my head. This was all my fault. The world had pointed its finger at me and I pointed that finger back at myself.

If you’ve ever felt this when people don’t take your fibromyalgia seriously, know you’re not alone. There are millions of people struggling from fibromyalgia, and thousands of them are online. Finding community boils down to preference. Take a chance here at the fibromyalgia support group, where I first found community during my diagnosis struggle.

Getty image via Aleksei Morozov

Originally published: September 28, 2020
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