I know that I’ll have psoriasis my whole life

Photo of a man on holiday at the coast
PantherMedia / Erich Teister

Walter, 54 years old

“Sometimes my psoriasis is better, sometimes it’s worse. It comes and goes in phases. I’ve learned to cope better with it over time. I’m more relaxed about it now – perhaps thanks to my age and life experience.”

My psoriasis started in puberty, when I was about 15 years old. At first, I only had a few areas of flaky skin on my head. My dad treated them with a normal skin cream. Other people couldn’t see them, so it didn’t bother us too much. But then the flaky areas of skin gradually spread across my whole body and they were really itchy too, which was extremely difficult to cope with.

I left trails of white flakes

I had very severe psoriasis at the time and left trails of white flakes of skin wherever I went. It was quite embarrassing. But the worst thing was the itching. When I got dressed I would scratch myself all over my body until the skin was raw and started bleeding. That was pretty much a normal part of my daily routine.

My psoriasis wasn’t actually a problem at school to start off with. But then things got worse as I grew older, and I had trouble concentrating. My grades got worse then too. That was partly due to problems in my family. But I remember that the itching really distracted me from my schoolwork. It was particularly bad when I had to study for exams.

My skin did affect how I felt around others

My skin really bothered me, even if I had friends and was accepted as one of the gang. I still went swimming and out into the sun, despite having psoriasis. I didn’t get the feeling that many people avoided me or anything. My parents were more of a problem because they fussed over me so much – sometimes too much.

Staying at health resorts helped, but not for long

The treatments that helped the most were my daily skin care routine and my stays at health resorts. I stayed at the Dead Sea four times. My skin was always great after that and I felt like I had been reborn. But scratching had become such a habit that it was hard to stop. Unfortunately, the improvement after staying at the health resorts didn’t last very long – perhaps about half a year, then my psoriasis came back.

Lotions help to keep my skin moisturized

I use lotions containing urea as part of my skin care routine. My skin is a lot better nowadays. It’s less flaky and hardly itches anymore.

My skin care routine takes up quite a lot of time every day, but I don’t mind because I know that it really helps. It keeps my skin moisturized, the flakes of skin are loose and I can remove them quite easily with my hands. Cold water and cold showers help to relieve the itching too.

Stress doesn’t affect my skin as much nowadays. What I eat has more of an influence: spicy food isn’t great and the itching can get worse if I drink alcohol, particularly wine.

I tried out a lot of different things

When I was 20 years old, I had treatment with a fumaric acid ester. That didn’t help much. I stopped the treatment after half a year. The next time I stayed at a health resort, they adjusted the dose and then it worked well for about a year. But then my blood levels got worse and I had to stop the treatment again.

I also tried out light therapy but that hardly worked at all. Combining light therapy and salt water helped more. During my various stays at health resorts, I bathed in salt water and then had light therapy. That was always really effective.

I once went to a health resort to try to change my diet, but that didn’t help much. After that, I didn’t do anything new for a long time. Then I tried out various homeopathic treatments at some point, but nothing worked over the long term.

My skin is a lot better now

My skin is generally a lot better now and it hardly itches anymore. It’s less flaky than it used to be, and fewer areas of skin are affected. The psoriasis is no longer all over my arm, just in certain places.

One thing I’ve noticed is that the time of year makes a difference. In the colder months of the year my skin is flakier, and in the summer the patches are only slightly pink and not at all flaky. Wearing short sleeves in the sun helps too.

Having psoriasis has hardly affected my everyday life in terms of social contacts. A lot of the people I come across already know what psoriasis is or know someone who has it. I have still had some negative experiences, though. But they were few and far between.

When I was a child, I had swimming lessons in an indoor swimming pool. Surprisingly, it was the younger children who said hurtful things. They said I shouldn’t go into the water because I’ll pass it on to other people. That upset me at the time, even though I knew they didn’t know what they were talking about.

False hopes and fake news

One thing that really bothered me was media reports that raised false hopes. They often talked about treatments that could cure psoriasis, as if by magic. That was a very simplistic view of things. The reports weren’t based on solid medical proof. It was all about trying to sell products. I know that I’ll have psoriasis my whole life. Sometimes it’s better, sometimes it’s worse. It comes and goes in phases. You have to be more realistic about it.

Joining a support group helped

The support group really helped me. I led a group myself as well. What helped me the most as a group leader was being active while at the same time learning more about useful contacts in the health sector. We went swimming together in a public indoor swimming pool every two weeks. I enjoyed going into the water with the others. People who have psoriasis often withdraw from society and hide away, especially if they have clearly visible patches. We notice that in the support groups too: A lot of people don’t come to the meetings or don’t make use of the available support options.

I’ve learned to cope better with my psoriasis over time. I’m more relaxed about it now – perhaps thanks to my age and life experience. If I have a flare-up and have to scratch myself a lot, then that’s just how it is. I’ve come to accept that as a normal part of my life, even if it still bothers me every now and then. It’s not a big deal to me anymore.

Acknowledgment

Our real-life stories summarize interviews with people who are affected by the medical condition. Our interview partners have given us permission to publish their stories. We would like to express our sincere thanks to them.

The real-life stories give an insight into how other people cope and live with a medical condition. Their opinions and comments are not recommendations by IQWiG.

Please note: The names of our interview partners have been changed to protect their identity. The photos are of models.

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Please note that we do not provide individual advice on matters of health. You can read about where to find help and support in Germany in our information “How can I find self-help groups and information centers?

Updated on April 22, 2021
Next planned update: 2024

Authors/Publishers:

Institute for Quality and Efficiency in Health Care (IQWiG, Germany)

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