The problem with Fibromyalgia, is that it is a PR nightmare. Often seen as a trendy disease because “everyone has it”, it is often derided on TV programs, films and in newspaper articles, mediums which also portray those who are affected by it as something as a joke. This is made more so by the fact that there are no outward visible signs of the disease or that there aren’t any definitive blood tests, at least in the UK. (although there is a FM/A test in the US which costs just under 1k) Instead, diagnosis is made by a process of elimination as well the 18 Tender Point Test, the results which few ascertain, can be easily fabricated. Some class it as a modern day pandemic, a hypochondriac’s dream. And because many of its symptoms are often linked to other ailments such as lupus and arthritis, Fibro isn’t really seen as an illness at all, but rather a myriad of symptoms of something yet to be diagnosed.
Fibro’s PR isn’t made any better by the fact that half the medical profession doesn’t believe in it’s existence or insist that it is all in the mind. Something that a few sessions of CBT therapy will sort out. To talk about it is to risk ridicule and disbelief and thus the bad press is set to continue. Some even believe that to talk about it is to enable it. But to talk about it is not the same as enabling it. Talking about it does not continue the illness. As one woman told me, her family demanded that she not speak about her illness as she was “making it real.” But it is real and to talk about it is to bring about awareness and understanding of something that is a genuine and disabling condition to those who live with and suffer through it daily.
There is another problem which backs up the negative attention that Fibromyalgia garners, and that is the disunity among some Fibro groups. Instead of binding together under a common cause, arguments centre around whether it’s an auto-immune illness or not. Whether it is brought on by trauma, illness, injury, is hereditary or congenital, and there’s huge debate on what to call it. Is it a disorder, a disease, a condition, or just classified as widespread pain? Some of these discussion tend to become quite heated with people being cited as “not really having the disease” or being accused of faking it because they dare to have a differing opinion. So how then can those who know nothing about the condition make sense of it when there is so much discord going on within it’s own community?
When Lady Gaga made the announcement that she too suffered from Fibro, she was lauded by some as a possible saviour, a much needed advocate. Someone that the world would listen to and take seriously. She would be the one to put Fibromyalgia on the map. But soon, even she was drowning under a river of scorn as people proclaimed that it’s was okay for her to be ill because she had the money to afford the best medical treatment. How then could she speak out on behalf of the rest of us?
Until we stand together and cease to belittle one another, I fear that Fibromyalgia will never be taken seriously by the public at large and that the majority of us will continue to suffer with the indignity of being seen as “fakers.” We need to stand up and be counted, to come forward and to tell our stories. But above all, we need others to believe that this is real, that we are valid and so is our illness.