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Sunday 18 March 2012

"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, 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.

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. For those of us suffering with pain and fatigue, it feels anything but invisible. What I propose are ways to make our experience more visible, in a sense, so that we can better confront it. 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... " - Deborah A Barrett


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