"18 years with psoriasis"
A small town in the Lubelskie voivodeship named Gościeradów. This is where Andrzej Grządka, who tells his story of "18 years with psoriasis", lives. He has been suffering from psoriasis for almost half of his life. He refuses to give into despair. He's not alone – his family and friends support him. He also takes great courage from other patients he met online and at the Polish Association of Patients with Psoriasis "Psoriasis". Here is an interview with a man who believes in a positive approach to disease.
Patients with psoriasis often call themselves "ladybirds". I have 37 spots. It has been 18 years since I was diagnosed at the age of 19. My psoriasis started with a rash. A dermatologist told me that I had psoriasis and gave me topical steroids. The skin symptoms later disappeared. I didn't know much about psoriasis There was no Internet, perhaps I would have been shocked on seeing photos of other people's psoriasis. I didn't realise what was yet to come. I used to live a relaxed life until I went to the army and developed psoriasis vulgaris, the worst type of psoriasis.
What did your doctors tell you?
I felt doctors approached me as though I were a rare specimen. I heard them talking to each other, explaining they haven't seen a case like this before. This came as the biggest shock in my life. I believed I would be fine as long as I used the ointments. I was devastated on learning that it was an incurable condition.
How much do you currently know about psoriasis?
I know that sun exposure and medicines improve my psoriasis. Most of the things I've learned from other patients with psoriasis that I'd met online. My mum advised me to contact other people suffering from this condition. I bought a computer, I connected to the Internet and this was the first time I realised that I was not alone, that there were plenty of people coping with the same problem. Everything changed when I first met my "new friends" off-line. I became friends with so many positive people. Since then I have become a big fan of our meetings. I feel these people help me keep my mental well-being and not worry so much about my condition, despite the few spots I have on my body. It's nothing compared to symptoms I had at the beginning of my therapy.
Did you tell your family and friends about your disease? Or was it the elephant in the room?
My mum knew from the very beginning. Apart from that, I didn't tell anyone about my disease; I didn't want anyone to feel sorry for me. My mum is ill and she has helped me a lot, she supports me entirely. I am a master in concealing my condition. When I notice a spot on the skin, I apply a gentle steroid. I also avoid stress because psoriasis is very sensitive to it. Nobody knew I had psoriasis. I used to tell people that I had a rash or an allergy. In the beginning, I didn't want to boast or talk about it. I was a bit ashamed. When I met my future wife, I told her immediately so that she wouldn't blame me for hiding it from her before we fell in love. When she saw me at the hospital, I looked really awful. My wife has been very supportive and cheers me up.
How has your condition influenced your life?
I've learned to conceal my psoriasis. My life changed when I became a member of the Polish Association of Patients with Psoriasis "Psoriasis". We try to help people who struggle with psoriasis, which makes me mentally stronger. I even participated in the Mister Lubelskie beauty pageant in 1997. I got tanned in a solarium to hide my spots, nobody noticed anything. It was a great adventure. I wasn't chosen as the most handsome guy, but I enjoyed the event. It turned out that I can enjoy myself despite the spots on my skin.
How has your social life changed because of psoriasis?
I am a family man and a very sociable person. I like spending time with my wife and children. When I feel depressed, I call my friends from the association and the online forum. I can always count on them. They are my psychologists. I feel great with other members of our association. They keep my spirits up and help me restore my strength. If you are healthy, you cannot fully understand what psoriasis is about. If you are interested, I am ready to share my experience. If someone laughs at me, I back off to avoid exposure to stressful situations. To my surprise, people are still shocked to hear that psoriasis is incurable.
Did you tell your colleagues at work that you have psoriasis?
No, apart from the closest co-workers with whom I cooperate on a daily basis. Some of them also have psoriasis. They like talking to me about their problem because I'm close to people from the association; we discuss psoriasis and I distribute booklets published by my association. I like my work and I feel good at it.
In 2013, I went to a two-week training. I had tests every day and when I woke up every morning I could count new spots that I had developed overnight. After 2 weeks, I was all covered in spots. It was because of stress but when I looked at myself in the mirror, I knew it was just a matter of time and it would all disappear.
How has the disease changed your life?
Psoriasis made me change my lifestyle. For example, I do not wear shorts during the summer. When the summer starts, I first have to tan my skin to put on shorts. I do not go to a swimming pool, although I love swimming. I'm afraid people would start to scream on seeing my skin. I do not show off. I always try to keep my skin tanned. In fact I do not think much about my psoriasis, the more I think of it, the worse it becomes because of stress. I think more about being healthy. I always have a great time when I talk to my friends online or offline. I don't care what people think when they notice a spot on my scalp or elbow. I feel mentally strong thanks to my friends.
How would you like the social perception of psoriasis to change?
If I could change anything, I would like people with psoriasis to feel welcome at the swimming pool, and to have a wristband reading: "Psoriasis is not contagious", to avoid unpleasant comments. I think many people would like to wear it. I also think children should be educated at school about this disease. Psoriasis definitely deserves more attention. There should be more psoriasis in mass-media so that patients can feel that they are not alone, that they can find support. Access to biologics is definitely the biggest challenge in psoriasis. Each patient should have biologic therapy funded by the National Health Fund to see if it works.
Do you see any positive aspects of your disease?
I'm optimistic. The positive aspect of my disease it that I've met so many nice people. If I didn't have psoriasis, my life would be ordinary, I would work and then spend my time at home. Because of my psoriasis, I can attend meetings our association meetings. I've met really great people with whom I keep in touch on a regular basis; we talk about things not necessarily associated with our disease. We may share experience from across different spheres of life.
Photos: Sebastian Wolny | www.sebastianwolny.pl | e-mail: firstname.lastname@example.org