Disability Horizons talks to Christina Larsen about her role in the Under the Spotlight project, a groundbreaking series of short films that sought to shed light on psoriasis and psoriatic arthritis, and break the wall of silence surrounding the disease.
Can you tell Disability Horizons’ readers a bit about yourself?
I am a 37 year old woman, living with my partner and our four children. I have psoriasis and psoriasistic arthritis. I am a positive person and I enjoy life in general. I speak in public about my chronic disease regularly, but I used to hide away.
How did you get involved in the Under the Spotlight project?
Through my voluntary work with the Danish psoriasis association I was asked if I would participate in the Under the Spotlight project. At first I did not want to – I have always hidden my disease and kept it very private. But once I began to think about it, I decided it was about time I stopped hiding.
I talked to my family about it; to my partner, and to my children. I wanted to make sure that they were okay with it, that they wouldn’t be ashamed. After speaking with them I found out that they had no problems with my psoriasis whatsoever. For them, it was a completely natural thing that I had psoriasis.
From the time when I was asked to join the project to the time I gave my final answer, nine months went by. It wasn’t an easy decision for me, but participating in the project was the right thing to do and I haven’t regretted it.
In your videos you say that when you were initially diagnosed with psoriasis at the age of 15, you hid it from everyone, including your parents. Do you think people often hide their psoriasis?
Yes. A lot of people with psoriasis hide their disease. Even though we are in the 21st century, there are still people who thinks psoriasis is contagious that it’s caused by poor personal hygiene. People also assume you can’t do sports because of it.
When other people have become aware of your psoriasis, how have they reacted to it?
When children see my psoriasis, they come up to me and ask about it. Sometimes they touch it with their fingers, and ask me if it hurts. We talk about it openly and then they move on with whatever they are doing. For them, it’s not a big thing.
Adults and grown-ups on the other hand are a different story! There have been people who wouldn’t sit next to me, who wouldn’t shake hands with me, who have looked at my psoriasis with fear.
People never ask about it, they just assume it’s contagious and dangerous. But luckily there are also the kind of people who don’t walk away, who do ask about it with an open mind, and these are the kind of people I like to surround myself with.
How has the Under the Spotlight helped those who have taken part?
For me it has meant a lot. It has changed the way I handle my psoriasis. I have become more open about it – I’m able to talk about it in public, to speak at seminars. The first time I spoke in public, the audience had already seen the films, and afterwards a young girl approached me. She told me that it might as well have been her story I had told. We talked and kept in touch by email. The film helped her to open up and be honest about her psoriasis.
Do you think the Under the Spotlight project is useful for non-psoriasis suffers as well?
Yes. It gives people without psoriasis an insight into what it’s like to live with a condition most people don’t see, due to the fact that it’s often covered up by clothes. The films offer real life stories with true feelings; they’re not just another dry brochure with numbers and statistics.
Find out more about the Under the Spotlight by visiting the project’s website.
By Nichola Daunton
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