I feel the tension creep up my neck, the warm water of the shower soothing. I reach up to massage the sore muscles, hoping that maybe I just slept wrong. Then the shooting pain runs up the back of my head, a shock wave. I have always imagined the pain like the lights on one of those fish that live deep in the ocean’s depths.
I am a healthcare provider with what many call an “invisible disability.” This piece from NPR last week has been stirring in my mind the past few weeks and the visibility diseases like chronic fatigue syndrome and the disease I suffer from, fibromyalgia, have gained even in the short decade since I was diagnosed.
I see this disease from the inside and the outside. Being diagnosed with a chronic disease at a young age has immensely shaped who I am as a person as much as it has deeply shaped who I am as a health care provider.
Even now, I can count on one hand the number of my friends in my adopted hometown knew that I had fibromyalgia until I had a flare-up recently that was brought on by stress, cold, and the pepper spray I ran into at a protest probably didn’t help matters. Mostly, I don’t talk about it because while the pain is something I deal with on an everyday level, it usually doesn’t impact my functioning.
There is also the fear of rejection. Of disbelief. That I will be told it’s all in my head, as many, many, (primarily women) have been told before me.
Now that I am almost two years out of school, many of the experiences that I had as a student are much of a blur. But there are some that are sharp and clear. One of them is the judgement that I witnessed a midwife, whom I looked up to immensely, pass upon a patient with fibromyalgia.
I pulled open her chart, and started reading aloud her problem list while my preceptor worked on other paperwork. My tongue caught over the word. F…Fibromyalgia. I let it hang in the air.
Oh great. Well, this will be a fun visit. Most of those people are drugseekers. What’s she on?
I felt as if someone had slapped my face. I had once had those words assigned to me as a 12 year old child. Drug seeker. Faking. Crazy. Nothing’s wrong with her. Have you called psych?
I am ashamed to say I did not challenge her. I did not disclose that I held more in common with this patient than my preceptor could imagine. I did not tell her of the long months that physicians threw drug after drug at me, many of them narcotics so strong I was in a constant haze, but none of them touched the pain.
Fibromyalgia is a complex, little-understood musculoskeletal disorder that doesn’t respond to narcotic drug treatment. As a skinny, scared pre-teen I was loaded up with enough drugs to keel over an ox and none of them decreased the pain. It was a chiropractor with whom my mother took me to, scared and helpless, after months of frustrations that suggested finding a rhumatologist.
The diagnosis seemed like a simultaneous life sentence and a blessing. After months of pain, uncertainty, and fear, I finally had a name to put to the pain, utter exhaustion, and fogginess that had plagued me for months. The relief washed over me, followed quickly by a sinking horror that I would be in constant pain for the rest of my life.
As the years wore on, I had fewer flare-ups and successfully went years without flares that would leave me incapacitated for weeks on end mostly through lifestyle modifications: getting enough sleep, staying warm, and staying active.
Since starting with my new practice I have had a few patients present that also have fibromyalgia. And it is with horror that I can see the eyes roll of the nurses and other providers that I work with as soon as the word is uttered. There is still so much stigma associated with this diagnosis that, to be completely honest, I am nervous about this very public writing about my experience.
Now, a decade and a half later, the tables are flipped, and it is I who wears the white coat. If there is nothing that I learned through my years of frustration and pain is that it doesn’t matter so much if I know exactly how to treat someone’s pain as long as I make it clear that I believe the pain is real.