Posted by Heidi/Mermie BUT......... Sometimes they provide reassurance. But they can also produce confused feelings when someone is silently suffering. This problem is not unique to CRPS. Parallels are easily drawn with other conditions with controversial diagnoses and uncertain cause, such as chronic fatigue syndrome, posttraumatic 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. For those of us suffering with pain and fatigue, it feels anything but invisible. Unlike illnesses with 'objective' measures and agreed-upon treatment programs, with fibromyalgia, we are the ones best able to detect the vagaries of our condition. It is therefore up to us to discover ways to understand and improve our situation. As we become more versed in the determinants of our symptoms, the seemingly invisible quality of our condition can work to our advantage. Ideally it becomes our decision when and how to make our experience visible and when to keep it invisible. THE VISIBILITY OF FIBROMYALGIA The visibility of fibromyalgia is no doubt increasing. Those who developed fibromyalgia 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. Sources estimate between 3 and 26 million Americans suffer from this condition. 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 an 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. Although some physicians remain inexperienced and reluctant to examine tender points, and some (including rheumatologists) refuse to accept that the bundle of symptoms constitutes a real disease entity, a growing number of physicians recognize and treat fibromyalgia . In addition, an international declaration in 1992 signed by medical experts from around the globe and endorsed by the World Health Organization decreed that fibromyalgia is "indeed a true medical problem." Those of us with fibromyalgia 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 fibromyalgia 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 physician. The diagnosis not only rules out other conditions, it opens up the gates to treatment. Being diagnosed with fibromyalgia initiates us into a sort of club.
on 8/27/2007, 3:34 am
But......U LOOK FINE - Another article from my friend D B.
"You look fine...." Such words are usually intended as a compliment.
In what follows, I address why fibromyalgia has been nicknamed the invisible disability and how this has been changing.
I also discuss issues relevant to having an invisible disability.
What I propose are ways to make our experience more visible, in a sense, so that we can better confront it.
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