FIBROMYALGIA - A HIDDEN DISABILITY
Written by Deborah A. Barrett
Edited by FMSNI
"You look fine...." Such words are usually intended as a compliment. Sometimes they provide reassurance. But they can also produce confused feelings when someone is silently suffering. This problem is not unique to Fibromyalgia. Parallels are easily drawn with other conditions with controversial diagnoses and uncertain cause, such as 'chronic fatigue syndrome', 'post traumatic stress disorder', and 'premenstrual syndrome'. These disorders can be considered "invisible" disabilities because they are virtually impossible for casual observers to detect.
What does it mean to contend with a seemingly invisible medical condition? It does not always work against us, for we can "pass for normal" when we want to. At other times, however, it might be helpful to have a large sign on our forehead saying "PAIN" or some such thing.
The Visibility of Fibromyalgia
The visibility of Fibromyalgia is no doubt increasing. Those who developed FMS more recently are much 'luckier' than those who had to bite the bullet for years while being told they were perfectly healthy. Fibromyalgia is now understood to be the most common cause of chronic musculoskeletal pain. One of the most significant contributions to this change was the creation of diagnostic criteria by the American College of Rheumatology in 1990. The official diagnostic criteria rest on a examination by a knowledgeable physician of "tender" points throughout the body. Although the criteria are subjective, they are quantifiable; the diagnosis is made when the patient responds to moderate palpation at a minimum of 11 of the 18 sites. In addition, an international declaration in 1992 signed by medical experts from around the globe and endorsed by the World Health Organisation decreed that Fibromyalgia is "indeed a true medical problem."
Those of us with FMS might find such declaration silly: Of course we have a problem -- we know it is not normal to hurt from head to toe, day after day. But the official recognition of FMS has had a tremendous impact on the legitimacy and therefore the visibility of our condition. For the individual with Fibromyalgia, the first step in making her experience visible is proper diagnosis by a doctor. The diagnosis not only rules out other conditions, it opens up the gates to treatment.
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 their own sanity. As Fibromyalgia and its symptoms are becoming more widely recognised 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.
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, providing information to patients and practitioners, and networking with health organisations, hospitals, and universities.
The Invisibility of Fibromyalgia
Why did FMS remain invisible for so long? 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 doctors 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 it 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.
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, doctors 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. We, on the other hand, must be motivated to maintain and meet normal social responsibilities, while contending with fairly constant physical problems. This makes it even more imperative to focus on ways to make our symptoms visible to ourselves so that we can react accordingly.
Making Fibromyalgia Visible
Because the symptoms of fibromyalgia are obvious (quite obvious!) to those of us suffering from them, it is we who must render them visible by recording them. Only we with Fibromyalgia are in the position to understand how changes in weather, activity, stress, and treatment programs influence how we feel. We know when we are a few steps away from "hitting the wall." By devising a personalised record-keeping system, we can discern how various factors affect our pain, energy level, and general mood. While the medical profession remains unclear about what constitutes the best regime for the Fibromyalgia population as a whole, individual patients can determine what works for them by recording and analysing their own data. Just like the diabetic who learns self management by taking blood sugars and regulating her insulin, or the asthmatic who measures his respiratory ability and self-medicates accordingly, we can find ways to measure and regulate our activities. While we may not have the "benefit" of blood sugar level measurements, our symptoms remain visible to us at all times.
The more visible our experience, the better able we are to educate our doctors. Most of us take several prescription drugs and have tried countless others. The optimal program must be determined by trial and error. There are no better evaluative data than systematic records of our own experience.
In every interaction, we face choices about the extent to which we want to make Fibromyalgia visible. Too much disclosure can generate fear, unwanted pity, and even discrimination. But hiding Fibromyalgia completely may create unrealistic expectations that may be difficult and unhealthy to live up to. Ideally, visibility should be provided on a need-to-know basis. In general, people calculate where and how they want to spend their money and time. In the same fashion, we decide how to allocate our precious energy and pain - whether, for example, we choose to shake hands with someone or offer an explanation (true or fabricated) to avoid it. This is a very individual decision. But the bottom line in this issue of 'visibility' is control, taking one's body into one's own hands.