It’s really important to know what you have and be well informed

Photo of a young couple (PantherMedia / AlexBrylov)

Laura, 24 years old:

“I was very open about it with boys after that. I told them what it was right from the start. And always explained that it isn’t contagious and there’s no need to be afraid of me. I never had any bad experiences or unpleasant reactions.”

My psoriasis started at a fairly young age, when I was about three years old. But I was lucky because my parents soon realized what it was. My dad had psoriasis too so they took me to see a doctor and I started treatment early.

I hated having cream put on me

From then on my parents put cream on my skin every day. Having cream put on was a big part of my daily life as a child. I hated standing in the bathroom every day and having cream put on me.

Although the cream made my skin less scaly, I still had visible patches of psoriasis. When I was in elementary school I had them all over my body. Back then there weren’t many treatments for children, the cream was basically our only option.

I knew what I had from an early age

My parents raised me to be confident and not hide my skin even though it looked abnormal. As a child, I already knew what I had and that it wasn’t contagious. And I told other people that too. That helped me to cope better with having psoriasis. In a way I was lucky too because there was a girl in my class who had eczema. So I wasn’t the only one with unusual skin.

But I still didn’t like going swimming, and tried to cover up the patches. I felt really uncomfortable when people stared.

Puberty was tough

When I was a teenager and started hanging out with boys, my skin condition became more of an issue for me. I was really reluctant to get closer to them. It’s no fun having to explain what’s up with your skin first. And psoriasis leaves a trail, doesn’t it? On dark bedding or dark clothes…. or if you scratch your head it sometimes looks like snow is falling.  It feels like you’re leaving a trail behind you, I really hated that. I had psoriasis all over my body: on my head, face and in my genital area.

I used to avoid wearing black because you could see the flakes of skin really clearly otherwise. I usually wore long-sleeved, light-colored clothes. My bedding at home was light too. And I regularly vacuumed the apartment. If I saw a few flakes of skin somewhere I’d feel the need to get rid of them right away.

The most obvious patches of psoriasis were mainly on my head and face, behind my ears and around my eyes.

Talking to a therapist helped

Then my parents suggested I have psychotherapy. Not just because of the psoriasis – bullying was an issue too. It was so good to talk to someone neutral rather than just talking to my parents all the time. The therapy really helped me later on in life too. It helped me to be more self-confident.

I was very open about it with boys after that. I told them what it was right from the start. And always explained that it isn’t contagious and there’s no need to be afraid of me. I never had any bad experiences or unpleasant reactions. I wanted to be honest about everything from the start. If anyone asked me about it or stared at me, I was happy to explain it to them.

When I was younger I was often shy and wanted to hide. I found it hard to approach other people. What we imagine others think of our psoriasis is probably far worse than what they actually think. It usually doesn’t bother them at all.

When I met my current partner I was in the middle of a bad flare-up. He didn’t mind at all, and even encouraged me to not feel ashamed of it. It makes no difference to him. He accepts me as I am.

I tried out all sorts of things

I tried out all sorts of treatments over the years, ranging from various creams to tablets and injections. The difficult thing about creams is sticking to the treatment. As soon as you forget to apply it a few times, your skin gets worse again.

Medications can have side effects too. I do sometimes feel tired and exhausted because of the treatment. But I can put up with that. The creams are often thick and greasy and stay on your skin for ages, which is a bit of a problem.

And there are ointments that have to be left on your scalp overnight. That can be quite messy, and it sometimes takes a lot of effort if you want it to work properly.

I once went to a rehabilitation clinic at the coast. The water and sea air was good for my skin and good for my soul. But the effect didn’t last very long. After a few weeks back home everything had returned to normal again.

I tried out different treatments and approaches for a while. Every time you try out something new you feel hopeful. But I’ve finally found something that really helps. I hardly have any symptoms anymore. There are just a few small patches of psoriasis left.

Informing yourself and talking to others is important

The fact that my dad has psoriasis too really helped. I could talk to him whenever I felt down. That strengthened the bond between us. As a child, when we went swimming together, I felt like he was a shield protecting me. Because of him I knew that I wasn’t the only one who had this skin condition.

I was lucky because my parents knew a lot about psoriasis so I was always well informed. When I was about 17 years old I became more interested in it myself and wanted to find out more about it. I think it’s really important – especially for young people – to understand what the disease is, what causes it, what happens in your body, what the treatment options are and who you can go to for help.

It’s also important to find other people who have psoriasis and share your experiences with them. If you have psoriasis as a teenager, then perhaps get in touch with other teenagers with psoriasis… I go to a self-help group. My friendships with other people who have psoriasis are special because I don’t feel I have to explain things to them or feel ashamed, and we have a lot in common and can be there for each other.

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.