What the Newly Empowered Chronic Illness Community Means to Me

I have had fibromyalgia for the past 25 years, since the age of 30. It took six years for diagnosis. Like so many struggling with chronic pain, my complaints were minimized, dismissed and left untreated. But even once diagnosed, I was still offered neither treatment nor guidance, just an “I’m sorry, it must be fibromyalgia.”

I did the research myself, directing my own care. Doctors were generally cooperative with my requests for various lab tests or medications, but I was always made to feel a little like a pest or hypochondriac.

It saddens me in retrospect to see that I did not have to endure much disrespect or disinterest from doctors to sideline myself from the medical system. I was so vulnerable and gullible that I internalized the eye-roll attitude almost immediately. I became convinced that I was overreacting to the pain, that my primary issue was anxiety. In part, I wanted to believe this because the symptoms were pervasive and frightening, and I wasn’t receiving the attention or care I needed. So I latched onto the hope that perhaps my symptoms would clear up if I could just calm down, not be such a “type A,” not be so… me. (Although I did have a diagnosis of fibromyalgia, this was still widely believed to be a psychosomatic illness).

As I bought into the lie, so did those around me. My husband, supportive though he is, felt that if the doctors could find nothing wrong, then my symptoms must be stress related. Friends and family also reacted this way, in part due to the stereotype of the hypersensitive woman, but also because I presented this way. I was ashamed of my relentless pain (as if it were my fault), so I tended to psychoanalyze myself when speaking of my symptoms. It’s as if I were trying to convey that I had this all under control, in some convoluted way.

Unless I had a real fright with the onset of new symptoms, I avoided doctors and tried my best to ignore the pain – or I turned to self-help books, spirituality and alternative medicine. These avenues in some respects were as bad or worse than mainstream medicine in their tendency to blame the victim or attribute pain or illness to “wrong” thinking or beliefs.

I also fell into a lot of self-blame and loathing due to my struggles with food: over- or undereating, and the consequent weight fluctuations. When through the help of a 12-step program I began to eat regular, healthy meals, I hoped for and almost expected a miraculous recovery. I did feel better, certainly. But I also discovered that balanced, healthy eating does not cure fibromyalgia.

Though I continue to live with pain, a great burden has been lifted in finally coming to understand that my pain is not the result of my very human emotions or struggles, that it is not my fault, that it is real. This has happened because those of us with chronic pain are now speaking our truth. I would not have expected, for example, that reading The Mighty, or watching Jennifer Brea’s TED talk and documentary, “Unrest,” or witnessing Lady Gaga’s courage in honoring her limitations would make such a difference.

But we are in the midst of a paradigm shift. Those with chronic illness are no longer ashamed nor invisible. We’re connecting with and respecting each other. In the recent past, all but close friends and family would be unaware of our ordeal, either because we were homebound, or felt pressure to “pass” when in public. Doctors largely dismissed us, which in turn meant less money for research.

In such an environment, it was inevitable that many, like me, simply withdrew. I believed my illness and the attendant depression and anxiety were my fault. I felt and therefore was very much on my own.

It is truly uplifting to see all that changing. I am grateful to all who share openly and honestly, and to those who read and listen. We may or may not have found a solution to our physical afflictions, but at least we no longer need be invisible, isolated or blaming ourselves. So thank you, my fellow pain warriors, for helping me to reclaim my sense of self, community and to feel at peace, if not in body, at least in mind.

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Getty Image by prawny