Explaining Fibromyalgia to Others
Do you understand what causes your fibromyalgia pain and can you easily explain it to others? According to a study by Robert Ferrari, M.D. and a team of primary care physicians, these two questions are the source of frustration among most people diagnosed with fibromyalgia.*
“Fibromyalgia patients have long been described as having a disorder that lacks face validity,” writes Ferrari. “The feeling or implication that one’s symptoms, especially pain, is described as ‘medically unexplained’ is of concern to patients, to the point of being offensive.”
Why shouldn’t you be a bit unnerved when your condition is put in the “medically unexplained” category? It implies your illness is poorly defined, despite three FDA-approved drugs for treating fibro and more than 20 years of active research on this condition.
“Patients have indicated exactly this: while the diagnosis may confer some legitimacy, it does not improve their understanding of their own illness, nor help them explain their illness to others,” writes Ferrari. Based on this perception, he compared a group of 104 fibromyalgia patients to a group of 272 “other” chronic pain conditions. This latter group had either rheumatoid arthritis, whiplash-associated disorder, osteoarthritis, tendinitis, bursitis, or back pain.
Ferrari found people with fibro were four times more likely to have trouble understanding and explaining their pain to others than people in the group of “other” disorders. Admittedly, the diagnosis of fibromyalgia has been controversial and patients are stigmatized for having such a wide range of symptoms. However, many patients in the “other” group had ill-defined or difficult-to-describe conditions as well.
“Whiplash is a highly controversial disorder,” notes Ferrari, “and rheumatoid arthritis patients have only ‘autoimmune’ and ‘inflammation’ to rely on for explanation.” Despite the complexity of these terms, rheumatoid arthritis patients feel confident understanding their pain and explaining it to others. Ferrari found patients with tendinitis, bursitis, and back pain often view their pain as a form of arthritis, which is what they told others. While this belief is incorrect, it sure makes life easier.
“It is not accuracy and proper explanation that matters in one’s sense of understanding,” claims Ferrari. Perhaps people with fibromyalgia have too many symptoms and too much information about their likely causes, which makes it more difficult to put into a few words, like “arthritis” and “inflammation.” For whatever reason, people tend to automatically understand these two words mean serious pain.
Attempts to explain your fibromyalgia in terms of everything that is going wrong in the nervous system and the muscles could be overwhelming. After all, scientists are still trying to iron out the details of what causes fibromyalgia pain and other symptoms. Although describing your fibro in terms of current research findings may be more accurate, it could also be an added burden you don’t need. Maybe if you just said you had widespread arthritis (even though you know this is not the case), life would be easier.
Knowledge is power for helping you adapt and understand why certain treatments may reduce your fibromyalgia symptoms. But when it comes to everyone else, view the explanation of your fibro on a need-to-know basis, with less info being the easiest for most people to grasp.
* Ferrari R. Quantitative assessment of the “inexplicability” of fibromyalgia patients: a pilot study of the fibromyalgia narrative of “medically unexplained” pain [published online ahead of print]. Clin Rheumatol. July 22, 2012.