By: Dr Alex Robber
After my diagnosis the first doctor I saw told me there was no fibromyalgia. I was about seven years ago, in my early teens. Over the years I’ve encountered a lot of skeptics, from those who doubted it’s presence to wishers telling me they know someone who had a “touch of fibromyalgia” that was almost always miraculously healed in a few weeks.
Historically, fibromyalgia has been simply an unpleasant disorder or worse, a dream come true for scammers. Fibromyalgia, a virtually invisible condition, is very hard to prove through studies. A diagnosis relies on signs prescribed to a medical professional, in combination with testing ruling out something “more severe”
It’s the kind of illness many people associate with an excuse for laziness, or more worryingly an easy way to claim benefits either as disability payments or to subsidize the incapacity to function. This myth is perpetuated constantly in the media.
Whether it’s a ‘ Home ‘ episode where pain medication is replaced by a placebo that relieved the symptoms of the patient. Or the comedy film “Identity Thief,” showing Melissa McCarthy, collapsing dramatically to the floor weeping over her Fibromyalgia.
As much as I love and admire her work, the scene has been troublesome to me. She plays a character, as the title suggests, that has stolen multiple identities and maintains her lifestyle by conning and scamming the people around her. Although not expressly stated in this scene, the character’s history adds to the impression that fibromyalgia is a fake illness or at least a convenient disorder, used to get out of something or to gain sympathy.
A highlight segment on the famous’ This Morning ‘ program of ITV where a lady said that dressing as a doll helped her cope with Fibromyalgia. The hosts asked in-depth questions about her wardrobe, her shoes, how much she’d spend on her set. The one thing that had been lacking… proper fibromyalgia issues. Quite correctly, this received a lot of criticism from the group of Fibromyalgia as it was seen to trivialize the disorder and omit all the pertinent information or dig into how fibromyalgia can affect the life of a person. I agree with the interviewee that’ distractions’ can be a wonderful way to cope with pain, but at a time when the media seems to be against us, I’m concerned about how this will affect the whole fibromyalgia community.
The disorder has gone from being highly mysterious in the relatively short time since I was diagnosed with fibromyalgia to something people have heard of at least. Not only has it become more widely recognized, it is funding and work that helps sufferers deal better with the disease and its limitations. 2018 is in many respects the year of recognition.
The words ‘ Invisible disorder’ or’ hidden illness’ are used on a regular basis and the perception of mental health seems to be always high. Maybe one day we will take Fibromyalgia more seriously, and we won’t have to’ prove’ our discomfort. It may be known as the life-changing disease and can be devastating in many situations. I certainly hope so for one.