By Ginevra Liptan, MD
Lately I have been thinking that some days fibromyalgia can feel like carrying a 200 lb. backpack—but with this illness the backpack is invisible. So employers, family, and doctors can’t always understand or see the burden. But truly just being able to take a step carrying a backpack that heavy is an accomplishment. That is why we are all warriors.
Frida Kahlo, the Mexican painter who struggled with life-long chronic pain, was a fibromyalgia warrior, painting while flat on her back in bed, carried to her last art gallery showing on her bed. That is why she is my hero.
So many of my patients impress me with their guts and courage: The single mom taking care of three kids while carrying the fibro backpack. Combat veterans struggling for the V.A. to acknowledge and treat their illness. Every patient that has ever had to try to educate a doctor that doesn’t “believe” in fibromyalgia is a warrior. Recently, I had the honor of meeting a literal fibromyalgia warrior—a female fighter pilot in the U.S. Air Force.
Every step you take forward, be proud. And know that the simple act of getting back up every time you fall down makes you a warrior. Know that there is a community of millions of others with fibromyalgia who do see the backpack you carry. We have to support each other. That is why I am so proud of our recent art auction fundraiser that raised money for the National Fibromyalgia & Chronic Pain Association to support their incredibly important political activism on our behalf.
The good news is that advocacy and lobbying efforts are working, and the healthcare system is slowly shifting to recognize the invisible backpack. In October 2015 when the new diagnostic coding system called ICD-10 was put into place, for the first time fibromyalgia had its own code, finally legitimized as a distinct entity.
Attitudes are slowly changing. I see it every day in doctors that reach out to me because they want to understand and learn how to treat fibromyalgia more effectively. Lately several primary care clinics have invited me to educate their doctors about fibromyalgia. Recently I worked in a teaching clinic with young internal medicine residents, fresh out of medical school, and it was really refreshing to see the difference in how young doctors think about fibromyalgia. But there is still work to be done. My state of Oregon remains the only U.S. state whose Medicaid coverage does not include treatment for fibromyalgia, and politic shifts around using opiates for chronic pain may make access to pain relief harder for many patients.
Today, on fibromyalgia awareness day, recognize yourself for your courage to keep putting one foot in front of the other. We must support each other. Only other patients can truly see your invisible backpack. We must stand up together and be seen to ensure further progress in fibromyalgia care.