Blogger Dr. Sharon Ostalecki of “Fibromyalgia: Fitting the Pieces” together writes quite eloquently and informatively about what it’s like to suffer from an “invisible disability” like fibromyalgia.

The disease can be hard to diagnose, and people who are suffering from it often don’t look sick or disabled.

“For those of us suffering with pain and fatigue, it feels anything but invisible,” she writes.

The disease was recognized as a “true medical problem” in 1992 and the Social Security Administration has included in its list of disabling conditions. This means that people with the disease can apply for Social Security Disability benefits; as with any medical condition, benefits are not guaranteed.

Dr. Ostalecki says that fibromyalgia sufferers can do things to make the disease more 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.

 

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