Living with fibromyalgia isn’t easy for a number of reasons, but the most disturbing for me is that health organizations have their own diagnostic criteria and “other” considerations for fibromyalgia. The only thing they agree on is the presence of body-wide pain, cognitive dysfunction, sleep problems, and fatigue. Some believe fibromyalgia is always accompanied by other pain disorders, but not enough to make that part of their diagnostic criteria. As a nurse, educator, author, writer, advocate, and person living with fibromyalgia and its comrades, I am baffled that people still can’t agree. I am excited about the research using the FM/a blood test because it is looking for the cause so we can be treated—not managed. This is exciting to me, because I am tired of the bias that surrounds a fibromyalgia diagnosis. I once had a neurologist tell me he wouldn’t treat my chronic migraine because he didn’t “believe” in fibromyalgia.
I have fibromyalgia, but I refuse to let fibromyalgia have me. My struggles are real, the unpredictability of a flare incomprehensible, and the bias is mentally and emotionally distressing to me. So, I cope by practicing most of the things I write about in our books (co-author, Jeff Miller, PhD), but I wish I didn’t have to be exploring and writing about new coping mechanisms. I wish I had less pain and brainfog; I wish I had the energy to enjoy life with my family and retired peers. I know I am not alone, and like many fellow survivors, I find comfort in that.