Posted by Heidi/Mermie Unfortunately, it is still not unusual for people to see numerous specialists and undergo many expensive tests before acquiring the correct diagnosis. The search for a name for one's suffering can be quite depressing and can lead one to question his own sanity. As fibromyalgia and its symptoms are becoming more widely recognized, however, diagnoses are being made more quickly. With the diagnosis of fibromyalgia, our pain and fatigue become associated with a legitimate disability. This, in turn, enables us to pursue avenues available to those with more "visible" disabilities, such as handicap parking permits and Social Security disability payments. In 1999, the US Social Security Administration included fibromyalgia in its list of disabling conditions. This does not mean that everyone with fibromyalgia would be determined to be "disabled," however if you are disabled by problems of fibromyalgia you no longer receive a label such as "adjustment disorder" to gain coverage. How invisible is fibromyalgia? Well, it is certainly visible in bookstores and libraries, and on the Internet! Over the last decade, dozens of self-help books have been published on fibromyalgia, and information sites and discussion groups span the Internet. In addition, fibromyalgia has now been discussed on mainstream television programs. Support groups have arisen across the country, providing information to patients and practitioners, and networking with health organizations, hospitals, and universities. While 'knowledge is power', the abundance of information pertaining to fibromyalgia can also be confusing. The treatment options being touted range from acupuncture, blue-green algae, biofeedback, dietary regimes, cough expectorant, hormone therapy, hypnosis, and trigger-point injections to a long list of pharmaceutical drugs. As there is little expert consensus on "what works," it remains challenging for even the best-intentioned reader to develop an ideal treatment program. THE INVISIBILITY OF FIBROMYALGIA Why did fibromyalgia remain invisible for so long? One contributing factor is the fact that 80% to 95% of fibromyalgia sufferers are women. Like other conditions predominantly acquired by women, its symptoms have often been attributed to hypochondria. In the 1950s and 1960s in the United States, fibromyalgia was often considered a "manifestation of psychogenic rheumatism" and patients were considered hysterical. Until recently, many physicians classified people who complained of the pain and fatigue as malingerers. Even with growing evidence of the physical reality of fibromyalgia, the gendered nature and virtual invisibility of this condition can result in insensitive and (at worst) nontherapeutic doctor-patient relations. The gendered nature of fibromyalgia can also negatively impact men . As fibromyalgia is defined as a "women's condition," men with symptoms confront separate issues of credibility. Not only may men be overlooked as candidates for the diagnosis (as with breast cancer or eating disorders), they face the additional difficulty of contending with weak, painful muscles in light of masculine ideals of strength and independence. Even some mainstream medical journals indicate that physicians are not enthusiastic about treating fibromyalgia. There are no laboratory tests to confirm the diagnosis, no understanding of the underlying cause, and no accepted therapeutic regimen to "cure" our condition. Clinical researchers complain that fibromyalgia treatment outcomes are difficult to evaluate because they lack "objective" findings. Furthermore, physicians are often frustrated by our multiple complaints and poor prognosis. Medical articles refer to fibromyalgia patients as "challenging" at best, and as "difficult" and "extremely draining." Traditional medical models best apply to those who conform to the "sick role," that is, patients who temporarily discontinue their usual roles and resume them when they improve
on 8/27/2007, 3:35 am
We soon become familiar with a new vocabulary --
tricyclics, trigger-point injections, benzodiazepines, 1-10 pain scales -- that become part of how we talk and even think about our own experience.
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