Fibromyalgia awareness and stigma

Fibromyalgia awareness day was May 12. There is a lot of fibromyalgia awareness out there now. A lot more than there used to be. But certainly, it could be improved on. We do encounter a lot of stigma still.

The more awareness the less the stigma. It used to be no one knew what fibromyalgia was and often as a result thought it was ‘all in your head’. And you would see doctors who ‘didn’t believe in it’ and would just brush you off as a result. It was pretty bad. To the point I rarely, if ever, mentioned I had it back in the day.

And it is a bit better with more awareness. But there isn’t as much awareness of it as other conditions. We have no runs or walks for awareness or research nationally, for example.

Fibromyalgia and stigma

You’re faking it

This is one of the most common stigmas we get. Because there isn’t a lot of understanding on what fibromyalgia is or the cause or even the treatment of it… people don’t get it. They think it is an easy thing to fake.

What occurs in people’s mind to doubt someone’s pain and illness? I mean really? Because the amount of people faking an illness is but a fraction of those that actually have one. So why go for doubt as your reaction to someone’s suffering? Is it the whole ‘they are not ill just lazy’ stigma… because you cannot See the pain of fibromyalgia? I don’t know. But I know to doubt someone’s suffering that you simply cannot comprehend is one of the rudest and hurtful things you can do.

Fibromyalgia is fake

It is not that You are faking but that Fibromyalgia isn’t Real. Because it is poorly understood, under-researched with no real cause or set treatment it is often dismissed by people as not a real thing. Often those in the medical field will have this stigma because they are not up on the research and think it is just a garbage diagnosis for these set of symptoms. In which case, what, they think we have all been misdiagnosed? Because that would say a lot about our medical field today if all those people were misdiagnosed.

Thankfully there is research on a fibromyalgia test that could help with diagnosis and … validation that a person has it. We shouldn’t have to prove that we Do have it, but like I said some medical professionals do not take it seriously enough.

It is all in our heads

This used to be a common medical stigma and it is still common in many people. Again, since people cannot see it and it doesn’t make sense or isn’t as well known… then maybe it is all psychological. Stress. Anxiety. Depression. Whatever angle they take. And to be honest, it is hard for someone with fibromyalgia to even say they are depressed. We have a high risk to be, but if we say we are, then it is ALL DEPRESSION and not fibromyalgia at all.

You just do not want to work

A lot of people do not understand fibromyalgia enough to understand how disabling it can be. I worked with it for some time and I can tell you there were only a fraction of jobs I could actually do. No job with standing all the time. No lifting or repetitive movements. No Shift work. It had to be a desk job and even then I had to find ways to cope with the fibro fog and sleep deprivation that caused their own set of issues aside from the pain. And I could work with fibromyalgia alone… comorbids knocked me on my butt eventually but fibromyalgia alone I could work with. But it is very much a spectrum with fibromyalgia and symptoms. Some people have it severely. Some people it gets worse until it is severe.

Fact is, we are not actively avoiding work. Because a lot of us do work, with the restrictions and limitations to what jobs we can do that is.  But it can get worse. And the cormorbids can crop up and they can get worse. And sometimes there is a time when we are unable to work. And damn it all, we fight that. We fight it because no one wants financial instability. And working full time is vastly different than disability income. Disability income is below the actual minimum wage so-called Living Income. So we are bumped to basically making so little it is hard to pay bills and live with it. I don’t know anyone who would think that is awesome.

We could cure ourselves… if we but tried

This set of people assume that fibromyalgia is caused by or can be treated by diet and supplements. Like ‘oh you would feel so much better if you were gluten-free or ate kale every day for the rest of your life.’ And if you tell them I don’t have celiac disease they would point out that 99.9% of people have to be gluten sensitive and that is your problem. While others insist it isn’t a gluten issue but high protein diets will definitely cure us. We get this a lot with Fibromyalgia. Because it isn’t a syndrome with a set treatment method. And that leaves a lot of space for people to assume it is caused by random things or random things are the cure for it. But we can’t cure ourselves even if we try… which we do. We try a Lot of things before realizing that most things make us worse or don’t help at all.

We use fibromyalgia as an excuse to not live life

Under this comes the most common stigma you will hear. That of ‘but you could do it yesterday why not today?’. You get this with any chronic pain. Because people do not understand limits change with pain levels. And when they see us do something a) there is a cost for that and b) we are also still in pain but a tolerable level that enables us to do some things. People wonder why we have to cancel plans. Or why we miss work. Or why… whatever. Fact is we have to pace a lot. Sometimes we are in a flare… and that can be brutal and we might not be able to do much or anything with a flare.

A lot of this stigma has to do with the way pain cannot be seen. And how with any chronic pain we begin to mask it to function when we can… so that we can function. We become more stoic. We may use a facade to get through the day. Whatever. Point is we are in pain all the time. Not just bad days. And people cannot see it.

We live a life with it, trust me. It is just out of necessity a paced, mellow life where we choose the price for everything we do.

So we still experience a lot of stigmas. And there are more than these even that are common. More research to define what fibromyalgia IS, like maybe a neuro-inflammation disease or specific treatments coming from research or a sure-fire diagnostic test would all go a long way in shifting the perception of fibromyalgia and help with awareness. And we are not there yet.

See more Fibromyalgia posts

Fibromyalgia and sensory sensitivity

Brain fog, cognitive dysfunction and fibromyalgia

Fibromyalgia and sleep issues

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8 comments

  1. So much of this resounds with me. I just wish there was a way for others to understand without experiencing it. There is so much less stigma around arthritis even though fibromyalgia is recognised by arthritis charities. It so horrible, but slowly I think awareness is rising and the stigma is shrinking. All we can do is continue to raise awareness x

    Liked by 1 person

  2. You’re right that more still needs to be done, even though there’s more awareness. You’ve covered some of the frustrating, difficult things with this condition so well. Excellent post, Nikki, I think you’ve done a fantastic job with it!
    Caz xx

    Liked by 1 person

  3. I agree Nikki, awareness is a bit better. But so agree with you and Bethan – people do understand arthritis a lot better than Fibro and don’t judge as much ( even though I believe arthritis is being proven more and more to be diet which is within our control). Still so much stigma. Keep on doing all you do to raise awareness.

    Liked by 1 person

    1. It would be different if they classified FM as arthritis or auto-immune or some other well known category but as it is the syndrome isn’t understood well enough to know where it falls.

      Like

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