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.
A physiatrist who I saw for physical therapy proscribed nortriptyline, an old tricyclic anti-depressant that had proven effective for some people with chronic pain (notably phantom limb syndrome in amputees). It helped a little. The pain radiating down my legs lessened and it centralized more in my back, which the physical therapist said was a good sign. It also gave me dry mouth, constipation, and bloating, but I was willing to make the trade-off.
Still, I was struggling to make it through a PhD program in history. I was unable to sit without pain and it was hard to focus to read and write. It was frustrating and depressing. I exhausted the counseling resources at the University I was attending and was referred to a young psychiatric intern who could see me at a reduced rate. He diagnosed me with depression and added an SSRI to the nortriptyline. I began to feel a little better, physically and emotionally.
But the shame I felt from the fibromyalgia label was compounded the depression diagnosis – which also carries a whopper of stigma. I struggled hard with that diagnosis too. When I was in high school, I had gone through a particularly lonely stretch when I was having trouble making friends. My mother, one day, asked me what was wrong. “I’m just depressed,” I said. “You are too young to be depressed,” she replied. And that, my dear, was that. Depression didn’t happen to someone like me.
My mother’s father had had bipolar disorder. It came on when my mother was 12. He survived at least four suicide attempts and was in and out of institutions for the rest of his life. He came to live with us in his final years before dying a stroke when I was about four. My mother was terrified that one of her three daughters would inherit bipolar disorder. My doctor assured me that I was not bi-polar, but my mother’s fear – and the shame that had surrounded my grandfather – was another factor in my own denial and shame.
When I got the diagnosis, I remember thinking that I wasn’t unhappy about anything other than the pain. It was preventing me from doing all the things I wanted to do. Because sitting brought it on, I rarely went out, so I didn’t have much of a social life. Graduate school was a struggle – I had to either stand or kneel on a chair through my 3-hour seminars. I had to read lying down which hurt my neck and made it hard to retain what I was reading. Try highlighting a book while lying down with your neck straight! I loved what I was studying – loved it like nothing else I’d ever done. I’d found my passion, my career, my calling. And the pain kept screwing it up. It sucked. I was 25. So yeah, I was unhappy, but “depression” felt unacceptable. At some point I read an article that explained how chronic pain depletes the brain of serotonin. That was an explanation I could live with – for some reason it made it physical rather than mental, chemical rather than behavioral. So that’s how I understood it. That’s how I felt ok about taking the medications. I would not identify as a person with depression.
In the decades that followed the pain ebbed and flowed, got worse, got better. It flared up if I sat or walked a lot, got better when I rested. But I had a life to live and I wasn’t going to let pain stop me. So I pushed through. Sometimes I would list fibromyalgia on a medical intake form, sometimes I wouldn’t. I rarely talked about it with those around me – even those closest to me. They did not know how much I was struggling and I almost never said I had fibromyalgia. People knew I had a “bad back,” so that there were certain things I didn’t do. But I kept fighting what felt like the identity piece. I was not sick, I was not disabled, I was not broken.
I presented – no I identified -- as someone who had it all together. That was THE single most important thing to me, for many, many years.
A lot has changed – I am now in my 50s and living a totally different life than I lived in my 30s. I’ve suffered two new back injuries from falls and had three more spinal surgeries. I’m in a different relationship and my kids are young adults. Seven years ago – after my old career was lost to disability -- I became a health coach and started working with others with chronic pain and illness. Some of my first clients came from a “fibro” support group. I shared my true story with my clients, my doctors, my therapist, and a few trusted friends. I learned a lot more about the history of the stigma surrounding fibromyalgia. Medicine advanced and more research came out. Drugs were approved by the FDA to treat it. It became less marginal. So the grip of the shame and stigma inside of me loosened. I learned to stop pushing through the pain and to take better care of myself. I learned to respect rather than challenge my limits. It’s still hard, but nothing like it was before. I still have pain, but my relationship with it is totally different. I respect it rather than reject it.
I began seeing a theme with my clients with chronic illness – especially those suffering from syndromes without definitive diagnoses. They couldn’t shake the feeling that it was somehow their fault that they weren’t getting better. They’d all been to multiple doctors who had discounted or dismissed their symptoms. Like me, their symptoms came and went, which somehow makes the idea that it’s a real illness even more suspect. People in their lives had made comments like, “you must not want to get better,” or “you must need this pain for some reason,” or “you must have unresolved emotional conflicts that are perpetuating it.” Some were accused of flat-out faking it to get attention.
Working with them helped me see the common thread: we had all internalized a stigma. We had turned on ourselves. We were not only suffering with very severe pain, fatigue, brain fog, GI distress, and other symptoms, but we were also wracked with guilt and shame. It was a double whammy, two arrows. We couldn’t perform or achieve the way we felt we should, couldn’t show up for others the way we thought we should. We blamed ourselves for not being enough. We kept trying to defy our limitations and we stayed stuck in a cycle of go-go-go-crash. Then, when there was no other choice, when we were completely depleted, we’d rest. A little. Then we’d feel better. Then we’d think we were cured. Then we’d start go-go-going again, and again we’d crash. Over and over and over I saw this pattern in myself and dozens and dozens of clients.
Our symptoms were invisible and inconsistent, and we were all in some degree of denial, so others couldn’t SEE how we suffered. More than one client has said to me “I sometimes wish I had cancer – then at least people would come visit and bring a casserole.” Of course they didn’t mean it, but in a way they did.
Giving ourselves permission to say no, to take deep care of ourselves, to put ourselves first – that is the biggest struggle. When we surrender, give-over to it completely, rest deeply, then we get better. It requires overhauling much of our lives. It requires that we change our understanding of productivity and of what makes us valuable human beings.
And now, for me, it requires accepting that I have a chronic illness. That I will always have it. And I can still live my best possible life – I AM living my best possible life. I have to come out, say it out loud, share the stories, tell others the truth about the pain and the struggle. I have fibromyalgia. I’ve had it for 30 years. And I am a whole, worthy, wondrous woman with a life full of love and joy as well as pain and struggle. I am privileged beyond measure. I am perfectly imperfect.