Combating Invisibility: Part II
© Carol Wallace
One of the psychological barriers that people suffering from fibro have to deal with is that it is, despite all the media attention, still “the invisible disease.” It does not leave marks.
Strangely enough, even though we typically suffer from an acute lack of decent sleep, we may not even look particularly tired. We don’t waste away, or in any way show signs of what we are suffering – except for perhaps a bit of dragginess when walking gets painful. Many people are still quite skeptical of this “disease from nowhere”. In the first place, it’s not a disease. It’s a syndrome - which means that it is a collection of symptoms most of which seem to occur in people with a diagnosis of fibromyalgia. It can’t be called a disease because we don't understand what really causes it. Diseases are defined in part by their causes. Unfortunately, a “disease” seems to have a lot more legitimacy than a mere syndrome.
The skeptical, of course, are inclined to believe that the thing doesn’t really exist – and so we can't possibly suffer from it. Most of them either dismiss us as hypochondriacs, or are waiting for us to wise up and get a real diagnosis – IF we are really suffering. And of course, we rarely look as though we are. Others may accept that it exists. But two things can get in the way of their belief that we really have it. The first is the simple fact that we don't look sick.
The second is that so many people suddenly seem to have it – and this does seem to surpass the bounds of credibility. But as I said earlier, many people are self-diagnosed, and many have been given a dismissive diagnosis – a label for aches and pains that may nor not be true fibromyalgia. This swells the number of so-called fibromites – and increases the natural skepticism of people around us.
And so, as if the physical problems were not enough, we are met not with sympathy and understanding but rather skepticism about out problems.
So How do We Make Ourselves Visible?
The answer is that we can’t – not in any world-sweeping way. We are not the only people who use selective perception and attention – it is a common trait in all people. So world-sweeping educational campaigns will only be perceived by the select few, while bypassing many of those who actually need to know the real facts. And we may not be able to influence casual acquaintances, unless they have the potential
