Rare disease: how I defeated the demon in my body

This text comes from the Stern Archive and first appeared in March 2022. On the occasion of the day of rare diseases on February 29, we publish it again.

In retrospect, I see things clearly and clearly, suddenly every mosaic stone fits together. But when I didn’t know at the time, I didn’t see the big picture. The people around me also didn’t see the connections for a long time. So I and my family and also the different doctors who treated me. My story dragged on for years, more precisely: over six years. Later I learned: This is not unusual. I am in the middle of the field. Sometimes it takes much longer for doctors to get the right diagnosis. Today I am 36 years old, illustrator and graphic artist and have illustrated this text. The whole thing started with me at the end of 20.

I have always been curious, fun -loving and physically robust – as a child, adolescents and young adults. I tried a lot, and I was particularly passionate about snowboarding, wave riding and skiing. Everything was easy for me, I learned quickly. While my friends said in adulthood that they had to go to the gym again, I preferred not to do anything like that because I didn’t want my thighs to become even more muscular. I also went jogging and cycled I did not look like a bodybuilder from worry. I just built muscles very quickly. Sometimes I joked that my calves themselves would be stronger when driving – only to accelerate and brake.

When I was 29, I suddenly got impure skin. I had long since had the puberty acne behind me. The change hit me hard. I had already participated in a photo shoot for the magazine “Brigitte” as a lay model, the natural type, with freckles and broad laugh. And now that! I tried tinctures, creams, ointments, natural cosmetics, nothing helped. I nibbled and descended my face, which made things worse – small scars were created. So it went for months. I suffered very much and became more and more depressed.

I didn’t want to see anyone anymore, no longer meet and broke out slightly in tears. I let my hair grow long and fall in the face like a curtain so that nobody saw my pimples. At some point I started with behavioral therapy because I was so unhappy. There it was about that I shouldn’t fix myself on my skin. And the question was in the room: was I unhappy because of my pimples or depressed?