Why is there such a strong Stigma with Fibromyalgia patients?
I think a big part of it is that the medical profession doesn’t want to admit how much they still don’t know, both in terms of treating illness or even identifying it in the first place. There is a perception that we are so advanced with science, we have all these amazing tests and treatments now.
So if it doesn’t come up on a test, does it even exist? Or even if we do acknowledge it exists, if we can’t treat it then isn’t it easier to ignore it?
An example – I went to a rheumatologist for joint pain in my hands. After questioning me about other symptoms, he told me I definitely had fibromyalgia, no question about it. He then proceeded to give me no treatment or management options whatsoever and did not want me to come back for a follow-up appointment.
When I next went to my GP, I found out that he hadn’t even mentioned fibromyalgia in his report to her, just a bit of vague stuff about hypermobility. It was like, as soon as he realized I had fibromyalgia, he wanted nothing more to do with me or to even acknowledge my illness because it was inconvenient or embarrassing that he didn’t know what to do about it.
Then with the general public, I think you have two factors at work. Firstly, how are they meant to believe a person has an illness if it’s invisible to them and the medical profession won’t acknowledge it? If the person was really sick, surely it would show up on the fancy tests we have these days, right?
Secondly, there is a very powerful effect where people want to deny that bad things can randomly happen to innocent people. Because if they acknowledge that, they have to acknowledge it could just as easily happen to them. So either it is something the victim did wrong, or it doesn’t exist.
You see this all the time, a person gets a life-threatening disease or has something terrible happen, everyone will say how sad and tragic it is but then immediately start looking for what the person did ‘wrong’ that they don’t/would not do. Eg.
- people who get sick didn’t eat organic enough, take the right vitamins, think positive enough
- any parent who has something bad happen to their child is negligent, because everyone knows the job of a parent is to never let their child out of their sight for even a second, 24 hours a day until they turn 18.
Given this tendency, what is easier for people to believe? That there are mysterious diseases out there that strike people down for no reason we can determine, for which there is no agreed treatment and that you could be next? Or that people are faking it for welfare benefit and/or have psychological problems?
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