The mysterious fatigue and muscle pain started during my second year of medical school. Finally it was diagnosed as fibromyalgia, which started me on a crash course towards learning what it was like to have an invisible illness, one that remains poorly misunderstood and marred by stigma.
My first lesson came one day during teaching rounds, when my senior physician authoritatively announced, “Fibromyalgia does not exist.” I quickly learned that many doctors, even my closest friends in medical school, didn’t believe the illness was real and dismissed sufferers as hypochondriacs or “hysterical women.”
Prior to fibromyalgia I thought I was an empathetic and compassionate person; after all, I went to medical school because I wanted to help other people. But my experience with this disease made me acutely aware that beyond the physical symptoms of this disease lay so many additional levels of suffering created by the disbelief and judgment of others. Here are the five biggest lessons that being both patient and doctor has taught me about fibromyalgia:
Lesson 1: I believe sexism is why we don’t have a cure for fibromyalgia.
I am sorry to say it, but sexism is alive and well in medicine, and I believe it is the primary reason why fibromyalgia science is at least 30 years behind where it should be. Fibromyalgia research has lagged far behind other diseases, bogged down by controversy and a century of arguments about whether it was a “real” illness. People who have fibromyalgia are mostly female and the illness has suffered from a gender bias that has hampered it being taken seriously by medicine. If this illness primarily affected males, I think we would have a cure by now, or at the very least a well-funded governmental institute dedicated to finding a cure!
Lesson 2: Having an invisible illness is a double-whammy.
Sufferers show no outward signs of the disease and standard blood testing is normal. Having an invisible illness – one in which you look fine – is a double-whammy, because not only do you have to try to manage your symptoms and grieve the loss of your health, you also have to fight against doctors, employers and even family members that may not believe you or understand your struggle.
Sometimes fibromyalgia feels like carrying a 200-pound invisible backpack. If others could see the backpack of fatigue and pain we carry, they would better understand our limitations. And your employer may be more forgiving when you need accommodations: “Wow, of course you need an ergonomic chair, you have a 200-lb backpack weighing you down!” But truthfully, employers, family and doctors don’t always understand or see the burden, which just makes the burden heavier.
Lesson 3: Pain is a subjective experience that cannot be truly understood by another.
Everyone experiences physical pain, and doctors as humans have usually experienced the typical pain that is described to them by their patients. Bad sunburn pain, check. Ankle sprain, been there. Sore throat, yep, had one last month myself. Doctors have a personal vocabulary to understand those types of pain.
But come into the office trying to describe a deep, aching, burning muscle pain that is migrating throughout your body, and you will get blank stares. I still remember the you-are-a-crazy-person look my doctor gave me in medical school when I tried to explain that it felt like my neck was tired of holding up my head.
These days I feel like my role is to help in the translation of the fibromyalgia experience so other doctors can gain more understanding. In part I do this by using the medical lingo they are used to, but I also try to harness the universal human response to the power of art. That is why I always show them the best visual depiction of fibromyalgia pain I have seen: “The Broken Column,” a self-portrait by the Mexican painter and fibromyalgia sufferer Frida Kahlo, in which her body is pierced by multiple nails.
Lesson 4: Most doctors still don’t know much about fibromyalgia – but it’s not entirely their fault.
In the years since my diagnosis, our understanding and ability to treat fibromyalgia has made huge progress. Yet most of this information has not filtered down to the actual doctors providing care. The majority of care falls to busy and overwhelmed primary care providers who don’t have time to go searching for new treatment ideas among the sea of medical publications. And the medical journals they are most likely to read tend to neglect fibromyalgia. In fact, since 1987, only one fibromyalgia study has been published in the New England Journal of Medicine, the most widely read medical publication in the world.
Lesson 5: Fibromyalgia is not caused by depression, but it most certainly can cause depression.
Several of the doctors I saw when my symptoms first started in medical school suggested my symptoms were caused by depression. But they were wrong. I was indeed depressed, but only because my life was falling apart around me, my doctors could offer me no help and I was exhausted and hurt all over. Anyone dealing with that would be depressed.
We also know that pain can actually cause changes to the brain that activate the areas associated with depression. So while depression does not cause fibromyalgia, fibromyalgia most certainly can cause depression. Getting my own depression treated was vita
l in my ability to forge forward while carrying that 200-pound invisible backpack in order to find treatments on my own that helped me to feel better.