Lesson 8: Finding Resources on Fibro
They Don't Walk in My Shoes
Nowadays it seems that everyone you encounter either has fibro or knows someone who has. It would be easy to dismiss it as a "yuppie disease" or the latest fad - because until a few years ago you didn't hear much about it at all. Yet it has been around, under one name or another, since the 19th century and has clearly been described in medical records of that time. It's only lately that we have given it the specific name of fibromyalgia. It was called fibrositis and other things before now. Keep that in mind - or inform would-be critics of that fact. You might also point out that it only affects a small percentage of the population despite its seeming pervasiveness - approximately 2 percent in the United States. Almost all fibro sufferers are over-achievers who have led active and useful lives. It is almost a mark of having tried to be Superwoman or Superman - and perhaps of having achieved that for a time. So while by the standards of those less driven you may appear to function normally - for you the changes are overwhelming. In this lesson we will try to learn how best to cope with the skeptical.
The reason we hear more about fibromyalgia now is that more medical practitioners realize that the syndrome exists - and after years of people being dismissed as hypochondriacs this is news. So you are reading more about it simply because it is newsworthy despite its long history.
You might point out to skeptics that many doctors are still uneducated about fibromyalgia and are likely to dismiss anyone who comes in with unspecified aches and pains with "It's just fibro" - meaning there are a lot of mislabeled people out there - people whose doctors have called their aches fibro without having gone through the actual diagnostics. Just because you see someone functioning better than you despite the label does not mean that you are lazy or malingering.
Check the Invisible Disease Agora for help in dealing with the reactions of those who cannot understand because they can't spend time in your shoes.
And don't feel guilty. It is NOT your fault!
