I Have Fibromyalgia

I am of the nature to grow old. There is no way to escape growing old.

I am of the nature to have ill-health. There is no way to escape having ill-health.

I am of the nature to die. There is no way to escape death.

All that is dear to me and everyone I love are of the nature to change. There is no way to escape being separated from them.

My actions are my only true belongings. I cannot escape the consequences of my actions. My actions are the ground on which I stand.

-- The Buddha (translated by Thich Nhat Hanh)

I have fibromyalgia. I was first diagnosed about 25 years ago, when I was in my late 20s. A few years earlier, I had developed lower back pain that radiated into my leg. It was diagnosed as a herniated disk and treated with surgery and extensive physical therapy, which had not resolved it. Then the pain migrated to my neck and shoulders as well. I ended up in a rheumatologist’s office to rule out auto-immune disease. He ran a bunch of tests, did a physical exam, and told me it was fibromyalgia. I’d never heard of it. He handed me a pamphlet published by the Arthritis Foundation and told me that the only way to treat it was with “pain management.”

I did not accept the diagnosis of fibromyalgia, though. I’m sure I threw away the pamphlet from the rheumatologist. I felt like I’d been told that I had a problem that didn’t have a solution and sent on my way. I dismissed it as a non-diagnosis. I learned that its very existence was controversial and that it carried a stigma. It affected women, overwhelmingly, often women in middle age. Many patients went to multiple doctors who dismissed their symptoms as psychosomatic (or downright malingering) because all of their tests came back negative. It carried echoes of centuries of male doctors dismissing women’s complaints as “hysteria,” or “neurasthenia” or “nervous exhaustion.” In other words, it was something that crazy women suffered from or used to get attention. I saw it as a personal weakness or failing. I was young, smart, ambitious, and arrogant. I had plans. I couldn’t be chronically ill, especially with an illness that carried the taint of crazy-lady. In hindsight I cringe that I thought about it that way, but I did.

I went to highly-regarded orthopedist to get a second opinion. His patients included some of the big-name professional athletes in the area. He took one look at me (a fit, attractive, agreeable, articulate young woman) and said, “you do not have fibromyalgia. You have chronic myofascial pain syndrome.” CMFS was also a clinical diagnosis – there was no test for it. I’d never heard that term so I asked what the difference was. He said, “there’s a difference, believe me.” I pressed him, “what’s the difference?” I was a student of feminist history and theory and I could FEEL where he was going with this. “You don’t have fibro, ok, I just know.” I kept pressing and he kept dismissing me. Finally when I would not relent, he said, you don’t have fibromyalgia “because you are not the type.” I wished I had asked him, “what’s the type,” but frankly, by that point, I was speechless. I left his office with a strong confirmation – fibromyalgia is not something to tell people you have.