How do you handle the stigma?

[alawrence]

I was recently diagnosed with fibromyalgia and went looking to my family for support. The first words out of my father's mouth "is that even a real thing? I thought that's just what doctors said you had when they couldn't figure it out our thought it was all in your head." I just sat there staring at him trying not to cry, I didn't even know how to respond. What do you say to people who think this way?

 

[Jemima]

Hi alawrence,

Ugh, I'm so sorry you got that response - it is crushing when someone in our lives reacts in this kind of way.

Not only is fibro incredibly well documented now, but studies have shown clear differences in pain signalling within the brain and substance P within the spinal cord, while research has connected unusual cytokine activity and low-level brain inflammation to the condition. It's incredibly complex, and still not well understood, but it is certainly real! Attitudes and understanding are evolving pretty quickly, but a lot of physicians and public perception are lagging when it comes to catching up.

Fibromyalgia pain is known as nociplastic pain - there's a great video explainer that came out on the Guardian website last week that you might find helpful. It explains that the central nervous system and immune system are involved. If you google "guardian chronic pain video explainer" you'll find it at the top!

The best advice I can give is to take a tough line and stand your ground - people who can't support you in your struggle are certainly not helpful presences in your life, and your father needs to adjust his attitude and get on board! It's so much easier said than done, I know, but you are already dealing with enough, so try not to shoulder anyone else's doubt. I really hope he comes around

 

[sunkacola]

I was recently diagnosed with fibromyalgia and went looking to my family for support. The first words out of my father's mouth "is that even a real thing? I thought that's just what doctors said you had when they couldn't figure it out our thought it was all in your head." I just sat there staring at him trying not to cry, I didn't even know how to respond. What do you say to people who think this way?

Unfortunately, that is the most common thing that people will say.
And, the thing is, it's actually true if you look at it. It is the thing that doctor's diagnose if they have tested for everything else that could be causing the symptoms you have and all those have come up negative. And it is also the thing they say when they think it is all in your head.

That doesn't mean it IS all in your head, though.
I advise that you calmly and in an unemotional manner direct your father and anyone else in your life who tries to pooh-pooh it, to articles such as suggested by Jemima, and explain to them that fibro is one of several syndromes or conditions that you not always visible on the outside, but that are nevertheless very real.

As Jemima says, you also do not have to stick around if someone is unreceptive to learning about this, and you don't need to allow any unsupportive people to be in your life making things worse. If you can express this to your father in a very calm way (emotion will only makes it worse, and make him more likely to think it's in your head!), he may be willing to let you explain it to him or to investigate what it is.

He may have said that just out of ignorance, and not out of a lack of desire to be there for you. Ignorance is not a bad thing...it is always curable by gaining knowledge. If your father is willing to learn, this will change.

 

[Sabina]

Say nothing. Silently bless them & move on to other folk who are more understanding.

 

[sunkacola]

Say nothing. Silently bless them & move on to other folk who are more understanding.

I think this is a completely reasonable approach and it is what I do some of the time. I don't always have the energy to go about trying to educate people, and I am sure the same is true for all of you reading this.

But I do try when I can to educate people simply because it really needs to be done. The more people who come to understand what fibromyalgia is and is not, the fewer times we will need to hear disparaging things, and the easier time of it we will have.

I find this is especially important with relationships with people you can't easily just remove from your life, because without their becoming educated in the facts they may continue to hurt you with their lack of knowledge and understanding. But it's important for everyone.

Not that it is "Our Job" to educate people, and anyone who doesn't want to do so will absolutely have my support in that.

At the same time, I think if you can help someone to become educated in the facts, at least sometimes, you might be contributing some good to our world. I believe that societal change happens on the level of each individual's consciousness, so for each person who can become educated, they might influence another, and so on, and this is how attitudes can change in a society.

 

[alawrence]

Thank you all so much for your support and advice. I'm sending a link to my father and hopefully things will get easier. I'm so grateful I've found this forum.

 

[JayCS]

"is that even a real thing? I thought that's just what doctors said you had when they couldn't figure it out our thought it was all in your head."

Well compared to what some people say this is worded extremely open-minded: Asking and admitting "I thought"!!
It allows the simple answer: "Yes it actually is real, and no, it isn't in our heads, but they can't figure much of it out yet, so they assumed it was in our heads, however they are making a lot of progress and most docs, and all good ones, know it is very real."
There is a lot more you can do, e.g.

• learn to describe what it feels like (imagine having the flu 4 days a week and recovering from it the rest),
• show the differences to normal thinking (e.g. disregarding pain will often make it flare up worse, pacing carefully makes it better),
• look up and print out memes about invisible chronic pain illnesses (I have hundreds, a lot of the best posted under <Pics & Memes that visualize fibromyalgia and other chronic pain illnesses>),
• show recent research articles...

My wife learnt to think of it as imagined when she was a nurse, but when she saw me getting stiffer and stiffer she sent me to a rheumy and I took her with me the first time. When it turned out there is nothing rheumatic, neurological & endocrinological and a 2nd rheumy said it's fibro there was no problem for her to accept it. But she's sensitive and sees the pain in my face (there's a nice meme on that, too) even tho I am used to masking it, as I've had pain all my life, and am cheerful. "Dad's" etc. usually aren't that sensitive tho... ;-)

 

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I've had the same reaction. I've been called all sorts. Once you learn that dealing with the condition is far more important that dealing with the ignorance.. You're on the right road!