What's wrong? You look fine! No one understood when I talked about the illness, no one could pronounce the name. My daughter was five years old when she said to the physical therapist, "My mum has fibromyalgia!" The therapist was flabbergasted. This was 2004. I was 40 years old.

Assessors humiliated me. At the end of the examination they said "You can stop now", as if I had been faking it all along. Or asked "How much longer is your husband going to put up with this?" I doubted myself. "Am I imagining it?" Because it wasn't just doctors and therapists I felt humiliated by. People around me also had discouraging sayings after asking, "What's wrong with you?" "You don't look like anything."

Sometimes they would say, "Fibromyalgia, that means the doctors haven't found anything, so you're not really sick." Often they would start telling me about situations they were going through, wanting to say, "What you have is nothing". Or they would say, "I slept so badly last night, you have no idea how terrible I feel." Yes I did. But you don't see anything on me.

Check out Fibrofee's "Bullshit Bingo". She has many disarming, quick-witted answers to sayings like: "You don't look like anything". You're guaranteed to be in a better mood when you read it. https://fibrofee.de/bullshit-bingo/

When I called my mother and she asked me how I was. I would sometimes tell her about the pain. She'd say, "Oh, why?" Every time, as if I had never told her about fibromyalgia. Even though I had explained the disease to her umpteen times. Most of the time I told her I was fine. But that didn't fit for her, because I had nothing to tell her about what I had done. I don't have to and don't want to tell everyone that I'm doing badly, I tend to withdraw then. But I hoped to be accepted by the family.


Sometimes I feel like I'm contagious with my "destiny". No one wants any part of that, so it's best to pretend it's not there, or that I'm not there anymore. I have lost some friendships because of the disease. In the US, fibromyalgia syndrome, chronic fatigue syndrome and irritable bowel syndrome are called "The fab three". I don't think they mean "fabulous" by that, or maybe they do, because "fabulous" means fabulous, so: great! But what is in the word? The obsolete meaning is "seeming like a fable". But we are missing the final punch line that explains everything.

You don´t understand me do you

I think in reality, you can't explain to those closest to you what it's like to be in constant pain, and you can't expect them to empathise. Everyone has their own spectrum and experience from which they draw the ability to understand things. My husband also sometimes says to me, "You don't understand" and is sad that I can't understand a feeling of his.

It is better to give up this expectation and hope, because explaining and especially the disappointment of not feeling understood consumes a lot of resources that we do not have in abundance. And that is the case on both sides. When thisyou don't understand me, you above all, that offends me is out of the game, we can let go of something that is weighing us down. We have to take care of ourselves and make decisions that are right for us. That's enough. One attempt to illustrate the use of resources is "The Spoon Theory". You can find the explanation on this page: https://shamethepain.de/den-schmerz-besiegen/

Relationships can suffer greatly from this feeling of not being understood and being disappointed. If we just accept this, accept that it is difficult for people to understand what they don´t see and experience, it can be very liberating. These subliminal accusations, which can drive our counterpart into the defensive, are then no longer perceptible. And Oh wonder, when these deficits are no longer in the room, you can suddenly have a fruitful discussion.

Acceptance and dignity are so important

There are many blogs on the subject of fibromyalgia. The self-help associations provide information about the disease. There is a lot of serious information about the disease on the web. Again and again the disease is the subject of television or radio broadcasts. But this information is often called up by those affected, less by the people around them. It is important to reach these people as well. To be humiliated and not to be believed is very hurtful and a great burden.

Yes, it is important to educate about the disease. We should be able to explain to our doctor or therapist how we feel and not be doubted. It is important to convey what we can and cannot do. We also wish for acceptance from our friends and family. But we do not have to and cannot understand everything, nor can we expect others to.

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