By Celeste Cooper
There is a prejudice against women when it comes to chronic pain, and those of us who live with fibromyalgia are no exception. The National Pain Strategy reports stigma and vulnerability exists, particularly in women exhibiting pain from conditions like chronic fatigue syndrome and fibromyalgia.
Mad and Motivated
Words do matter, especially words like “fibromyalgianess.” The National Institute of Health Pathways to Prevention report, The Role of Opioids in the Treatment of Chronic Pain, says the “concept” of “fibromyalgianess” is the tendency to respond to illness and psychosocial stress with fatigue, widespread pain, and a general increase in symptoms. Since when is fibromyalgia a concept instead of a well-documented physical illness?
synonyms: idea, notion, conception, abstraction; theory, hypothesis; belief, conviction, opinion; image, impression, picture
(Google dictionary, accessed September 12, 2017)
So, call me mad and motivated, once again. Providers become part of the problem when they use concepts, theories, and “opinions” to diagnose their patients. It is apparent they are ignorant regarding the biologics of fibromyalgia. I doubt they are aware there is a blood test or other objective assessments for fibromyalgia or that the number of men is much higher than what has been reported.
~Norman Hanley, founder of Men with Fibromyalgia.
Some time ago, I received a request from a medical student taking an abnormal psychology class. He wanted to know if I thought fibromyalgia was a psychosomatic disorder.
I was glad for the opportunity to dispel the myths surrounding our illness. While prolonged, severe emotional distress is thought to be a trigger, just like physical injuries, it is merely that – a trigger. Emotional trauma puts stress on the body just like physical trauma. And many chronically ill people experience depression; it is not specific to fibromyalgia. My short answer:
I have to wonder about the many falsehoods circulating about fibromyalgia because of ignorance and unfounded labels like “fibromyalgianess.” It’s important that we seize every opportunity to set the record straight. When I get mad, I get motivated.
I don’t want anyone to fall prey to the discrimination that surrounds fibromyalgia, because it is very real. We can be tempted to give into dread, especially when in pain and we haven’t had any sleep. We are equally tempted when we are treated as though it’s all in our head. I know the temptation to give into dread. When I was seeking migraine management from a neurologist because mine retired, I got a real jolt. This new specialist said, “You need to see a pain management doctor for treatment of your chronic migraine, because I don’t ‘believe’ in fibromyalgia.” When I picked myself up off the floor (literally, because I experience near fainting every time I bend over if I don’t keep my blood volume up), I looked him straight in the eye and said,
“Fibromyalgia is not a BELIEF system.”
You can bet I got mad and motivated. I reported him to the office staff, my referring doctor, and to the American Medical Association. About six months later, I received a letter stating that physician was no longer part of that neurology practice. Could it be his departure was more than coincidence? I like to think it was.
I could have surrendered to dread; there was a time I would have. But, these days when I am treated disrespectfully or I feel hurt by ignorance, I use my anger constructively, and I feel empowered.
Labeling our pain and other symptoms is troublesome and personally offensive. I cringe when I have to add “fibromyalgianess” to my word processing dictionary. As I do, I am reminded of the multiple sclerosis patients that blazed this trail before us despite their “hysterical paralysis.” We will survive the prejudice and the politics of pain and fibromyalgianess too.
I give thanks to all those who collaborate and to those who stay the course to finding the cause of fibromyalgia. They give hope to the fibromyalgia community.
Celeste Cooper, RN, is a frequent contributor to ProHealth. She is an advocate, writer and published author, and a person living with chronic pain. Celeste is lead author of Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain and Broken Body, Wounded Spirit, and Balancing the See Saw of Chronic Pain (a four book series). She spends her time enjoying her family and the rewards she receives from interacting with nature through her writing and photography. You can learn more about Celeste’s writing, advocacy work, helpful tips, and social network connections at CelesteCooper.com.