What you are seeing, is not me

Hi, my name is Dawn! I am not fibromyalgia. You don´t believe in my illness, but it is what you see, not the rest of me

I am not the disease

What you are seeing is not me!

....... Now I know that even if I were no longer in pain, I would definitely not be the person I was before. Because a so-called "invisible disease" has made me a visibly different person.

Not so bad?

That's not so bad? It may look that way. I am working on the outside, constantly compensating. That´s the dilemma! But I long for who I was. 

Breaking boundaries even though it hurts.

My name is "Dawn," not "Fibromyalgia."
I am a person with many facets, not just a disease.
Overweight, unfocused, constantly looking for words. But there's more to it than that.

You don't see...

You do not see that a hug hurts; that clothes hurt. That can be allodynia.

Have you seen the movie "P.S. I love you"? There is a scene where Holly, the main protagonist, vigorously tears off her clothes. No, not to have passionate sex, but because they encumber her. It's like that a lot when I come home.

You do not see how long it takes me to sew the dress for my daughter, only the finished result. Lots of mistakes, back pain, pain allover.

You don't feel when my knickers are wet - no toilet, my embarrassment.

You don't see me wandering the landing at night, looking for a place to rest. In bed, just tossing and turning, throwing pillows and blankets off the bed. Side-sleeper pillows, vein pillows, neck pillows, neck roll, nursing pillows - discarded! None of them help.

You don't see why I drive small distances. If I make the way somewhere on foot, I often don't make the way back.

Showering and going to the toilet is sometimes too much.


Founding and leading a self-help group; taking part in further training; sewing, and trying to knit or crochet again and again; being passionate about cooking; writing, because I often cannot speak. (Other words come out than the ones I want to say and I can't grab them back). I did and try to do this because I want to be Dawn. It is really hard work.  Often it doesn't work. But these are things I am attached to doing. They are part of my identity.

Suffering but no longer silent

In connection with "invisible diseases" I would like to draw attention to the trailer of a documentary about Invisible Illness. They are stories of hope and resilience.  It´s on Youtube so check out data protection. https://youtu.be/Fp8Dg7WncJQ/



A visibly different person has devulged from an invisible disease.

Take a closer look

Fibromyalgia is invisible, it does not leave any traces on the skin, does not cause wounds that others can see. It's a lonely, desperate pain.


It is important that we educate the people around us about the disease. That way it will be known and hopefully lead to less discrimination.

We are not seen

In this audio file Julianne Moore, the actress who played Alice in "Still Alice", talks about how illness changes us. This is primarily about Alzheimer's. But we also know the problems with word finding disorders, memory loss, and the way our fellow human beings perceive us. Fibro fog is not Alzheimer's! I don't want to scare anyone with this idea. The audio file and the accompanying privacy statement are in English.

For more information about the interview with Julianne Moore. Interview with Julianne Moore NPR

Outside the disease there is someone else there, too

In my article about flamenco as a symbol of fibromyalgia, I talked about how many people don't dare to put colour on paper to express themselves. Dance art instead of painting .In the following video in German with English subtitles you can see what can emerge when colours are a voice. An art teacher assigns two tasks: to paint first a happy and then a sick woman. Take a look at the results. It moved me to tears. (The subtitles are actually more visible on the German page.)

We need your consent to download the content from YouTube.

When you click on the video, Youtube [Google Ireland Limited, Ireland], which is jointly responsible with us, plays the video, loads scripts on your end device, stores cookies and collects personal data. This enables Google to track activities on the Internet and to display advertising in a target-group-specific manner. There is a data transfer to the USA, which does not have EU-compliant data protection. You can find further information here.


Links to posts on my site which touch on invisibility

Series: - my intestines and me

  • Part 1 - Bowel movement hard and soft facts
  • Part 2 - What role do our bowels play in our body?
  • Part 3 - Interview with our gut
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