On my last day of internal medicine residency, as I finished my senior grand rounds presentation, I “came out” to my colleagues and confessed the deep dark secret I had been hiding since medical school: I have fibromyalgia.

A few jaws literally dropped, and there was an awkward silence, then polite applause. Afterwards several of my colleagues came up to talk with me privately and were offended and/or curious as to why I had never mentioned my health in the three years we had worked together nearly every day. And I told them all the same thing: Fibromyalgia still has a powerful stigma to it, which is why I refer to it, only half-jokingly, as “the F-word of medicine.”

As a third-year medical student struggling with muscle pain and fatigue, I quickly learned to keep my mouth shut. One day during teaching rounds, my senior physician authoritatively announced, “Fibromyalgia does not exist.” At clinic, I vividly remember when one of my fellow students picked up a big, thick patient chart and said: “Guess what this patient has? Fibromyalgia, of course!” This was greeted with sympathetic chuckles from the other students and doctors in the room.

So I told no one about my illness. Even when I took a year-long medical leave, only my dean knew about my “shameful” diagnosis. Thankfully, that year I stumbled onto a few alternative medicine treatments that helped me recover enough to get back to school and finish residency.

That was 15 years ago, and things have changed for the better. Most doctors do now accept fibromyalgia as “real,” and with ICD-10 it now has its own diagnosis code. But there is still a stigma. A patient of mine recently described her surprise at how well she was treated by her medical team once she was diagnosed with breast cancer, compared to the care she experienced for fibromyalgia.

Why is fibromyalgia still a “second-class” diagnosis? Is it gender bias, as it primarily affects women? Is it due to its orphan status, claimed by no specialty but awkwardly straddling the fields of rheumatology, neurology, and pain medicine, but with management left to the time-strapped PCP? Or is it because we still don’t have any objective diagnostic tools, and the standard treatments we have are marginally successful at best?

I think it is primarily the latter. A century of arguments about whether it is a “real” illness means research has lagged far behind other diseases. It is hard, and incredibly frustrating, to treat an illness that is poorly understood and for which there is little to offer.

While doctors do try to help their fibromyalgia patients, most simply do not have the time, expertise, or tools to do it. And even if primary care providers had the time to learn more about fibromyalgia, where would they? Since 1987, only one fibromyalgia study has been published in the New England Journal of Medicine. This is for an illness that affects 10 million Americans!

Attitudes are slowly changing. Of course, there are still the doctors that still roll their eyes about fibromyalgia patients. The physician assistant who recently joined my practice has been surprised by the dismissive and cruel remarks from some of her former colleagues about her new career direction. But for the most part, the “is it real” controversy has been quieted by the discovery of objective abnormalities in pain processing seen on functional MRIs.

When I used to give talks about fibromyalgia they would be attended sparsely by a few apologetic nurses or clinic staff, the doctors having sensibly run for the hills. But twice over the last year local primary care clinics have invited me to talk to their providers and to my shock both sessions were well attended, by doctors who were voluntarily spending their lunch break learning about fibromyalgia! That is when I knew the tide was really turning.

Now the challenge is how to get effective, comprehensive treatment strategies filtered down from research into the front lines. A patient of mine recently moved to a small town and established care with a new primary care doctor. She sent me an email to report that the first thing her new doctor said to her as he walked into the exam room was, “I hope you don’t expect me to manage your fibromyalgia, because I have no idea how to do that.”

Ginevra Liptan is the author of The FibroManual: A Complete Fibromyalgia Treatment Guide for You and Your Doctor.  She blogs at her self-titled site, Dr Ginevra Liptan.

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