Posted by Heidi/Mermie 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 personalized 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 analyzing their own data. We must don the hat of scientist and devise an optimal program. 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 (and knows when to call the doctor), 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. Making pain visible does not have to rely on words. Sometimes writing about illness puts too much emphasis on the very things we want to ignore . Drawing pictures offers an alternative way to capture our daily experiences. Pictures can be simple or quite creative and elaborate: they could represent not only your mood, but also contain symbols for relevant factors such as weather conditions, medications, and daily activities or stresses. Trends that would have been lost on our daily memories could be detected in the overtime changes in visual representations. The more visible our experience, the better able we are to educate our physicians. 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 unhealthful 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 -- which is the hallmark of the women's health movement and of self-help groups. The importance of control is also echoed in the fibromyalgia medical literature. A recent study found that "self efficacy" (the belief that one can competently cope with a challenging situation) was found to be the best predictor of improvement in fibromyalgia.By: Deborah A. Barrett, Ph.D.wellnesstrainresearchgroup!M!
on 8/27/2007, 3:36 am
We, on the other hand, must be motivated to maintain and meet normal social responsibilities, while contending with fairly constant physical problems.
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