This text comes from the stern archive and first appeared in March 2022. On the occasion of Rare Disease Day on February 29th, we are republishing it here.
In retrospect I see things clearly and suddenly every piece of the mosaic fits together. But when I didn’t know what was happening to me at the time, I didn’t see the big picture. Even the people around me didn’t see the connections for a long time. That’s what happened to me and my family and also to the various doctors who treated me. My story went on for years, more precisely: over six years. I later found out: This is not unusual. I’m well in the middle of the field. Sometimes it takes much longer for doctors to come to the correct diagnosis. Today I am 36 years old, an illustrator and graphic designer and have illustrated this text. The whole thing started for me in my late 20s.
I have always been curious, fun-loving and physically robust – as a child, teenager and young adult. I tried a lot of things, and I was particularly passionate about snowboarding, surfing and skiing. Everything sporty came easy to me and I learned quickly. While my adult friends said they needed to go to the gym again, I preferred not to do anything like that because I didn’t want my thighs to get any more muscular. I also didn’t go jogging or cycling for fear of quickly looking like a bodybuilder. I just built muscle very quickly. Sometimes I joked that my calves got stronger even when I was driving, just from accelerating and braking.
Summer 2014
When I was 29, I suddenly developed problem skin. I had long since had my puberty acne behind me. The change hit me hard. I had already taken part in a photo shoot for the magazine “Brigitte” as an amateur model, the natural type, with freckles and a big smile. And now this! I tried tinctures, creams, ointments, natural cosmetics, nothing really helped. I picked and picked at my face, which made things worse – little scars appeared. This went on for months. I suffered a lot and became more and more depressed.
December 2015
I didn’t want to see anyone or meet anyone anymore and I burst into tears easily. I let my hair grow long and fall over my face like a curtain so no one could see my pimples. At some point I started behavioral therapy because I was so unhappy. The point there was that I shouldn’t fixate so much on my skin. And the question was: Was I unhappy about my pimples or depressed?
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