How can you move out of the shadows?
Psoriasis makes you want to hide from the world. This is a story of Danuta Nowakowska who tries to be optimistic despite the difficulties. She has established the Wielkopolska Association of Patients with Psoriasis "Move out of the shadows" [Wyjdź z cienia] – a place where patients can seek help and information about psoriasis and its therapies.
How long have you been suffering from psoriasis? When did you learn about your condition?
I am 69 years old. I was diagnosed when I was 19. I was studying pharmacy at Wrocław Medical University. One day I went to the hairdresser's. Those days they used metal hair curlers and hair clips. I once injured my scalp when I was at a hairdresser's and this is how my psoriasis started.
Did you go to a doctor when you saw the first symptoms, or did you try to use home remedies to reduce your symptoms?
First I noticed several small spots on the skin. After a few days, there were plenty of new ones. They spread all over the body. My mum took me to a dermatologist who said I had psoriasis.
Have you had any other cases of psoriasis in your family? Did you know much about psoriasis back then?
I remember the scalp psoriasis wasn't that important. The real problem emerged when the disease spread all over my body. I shared a room with two friends, it was impossible to conceal my condition. I felt embarrassed and inferior, I was trying not to cause any trouble. Before I went to see a doctor, I talked to my friend and she told told me: "Danusia, you have psoriasis. I have it too, it's incurable."
At that time I knew nothing of psoriasis or any other skin conditions, and I was shocked to find out that it was incurable. I managed to get along during my first year at the university, I guess I didn't even go to the doctor. Then I went to my parents for holidays. They lived in the countryside so I was free to take my clothes off (nobody would see me) to sunbathe because I was told it could improve my psoriasis. It didn't. I moved to Poznań to study there only because I had a doctor in my family and I believed it would be easier for me to find better treatment methods.
This is when my lifelong struggle with psoriasis began. I started going to the hospital. My hospitalisations were very long, I went to hospital up to twice a year. I had to interrupt my studies and take a dean's leave. I think it would have been easier for me if I still lived with my parents instead of sharing a room with friends. It was really hard.
How did your friends react when you told them about your disease? Did they try to learn more about psoriasis? Or did you experience any negative attitude or behaviour?
It seems my friends and family accepted me, they felt it the right thing to do. Perhaps I turned a blind eye to unpleasant behaviour. During my studies, I don't recall any signs of hostility; everybody was rather indifferent. I did all I could to conceal the symptoms. Many of my friends didn't even know I had psoriasis. When I went to hospital, I invented other diseases because I was afraid to admit I had psoriasis. I knew how to conceal my disease, I was a real professional in this area. That was a real challenge because 50% of my body was affected by psoriasis. I was really tired of it.
How did you try to conceal your disease?
I used to wear long trousers and long sleeves. I applied lots of make-up on my hands. I didn't go to parties or anything like that. My scalp was covered with a thick layer of scale, but I concealed it with my hair and I tried hard not to scratch. I was very ashamed of my condition. I still love to be alone.
Did psoriasis affect your professional activity in any way?
Yes. I would be definitely treated differently by my boss, for whom presence at work mattered most and definitely reduced by chances for promotion. I was absent at work for many days. I did not qualify for the rise that I desperately wanted. I loved my job and I was trying hard to be a diligent worker. Since I turned 19, I've been to the hospital over 50 times, always for a long time. Two years ago, I met a friend from work who told me that other people I worked with used to say unpleasant things about how I looked.
You've mentioned your family. Have there been any other cases of psoriasis in your family?
Yes, but nobody dared to admit it. Later psoriasis was also diagnosed in one of my brothers. Fortunately he only has mild symptoms on the scalp and arms. Anyway, he didn't pay much attention to it.
How did your therapy proceed? Did it work from the very beginning?
In the beginning I visteted one doctor after another, including therapists who offered me various ointments and herbs. One doctor claimed he used homeopathy but instead, he gave me steroids in large doses. I ended up at an Endocrinology Clinic. Only later did I find a great doctor, who is also a wonderful person. I was receiving treatment at a hospital because I realised there was no other treatment apart from awful, smelly ointments. I felt wonderful at the hospital, it felt like home. I didn't have to hide under my clothes.
Everyone at the hospital was covered with ointments. Perhaps I am sentimental, but I felt really good. When I was at home, I applied ointments to my skin and I kept telling my kids not to let anyone in or not to answer any phone calls. I locked myself up at home and isolated myself from other people. At work, I always carried a steroid ointment with me for burning and cracked skin. My psoriasis was very painful. Some people say they feel some itching, but I really suffered from it.
How did your family and close friends react to your disease?
My family has always supported me. My parents were most concerned about my condition. I also wanted to start a family. I fell in love with a man who said he was familiar with this disease. But I guess he felt overwhelmed. I lived with my parents-in-law, I felt really embarrassed as I started my day with cleaning up the flakes. Nobody supported me. To make matters worse, caring for my skin was very time-consuming.
What is your saddest experience associated with your disease?
I was all swollen during my first pregnancy. I used to hide my skin from my husband. When my son was 3 months old, I remember coming home from a walk, it was very hot and I was wearing long trousers and a long-sleeved top. I locked myself in the bathroom to cry. I decided I should go to the hospital. I didn't breastfeed any of my babies. I had wounds on my breasts and I was unable to breastfeed any of my children. My marriage didn't work from the very beginning. My husband never comforted me. Perhaps our marriage didn't survive because we weren't' really close. Maybe it was me who is to blame because I didn't accept myself. I was suffering because my marriage didn't work out as it should. We broke up soon. I was devastated, I was afraid I wouldn't manage on my own. It was a real ordeal, I had to go to hospital and had two babies to attend to. This situation left a mark on my daughter, she had anorexia and bulimia. After all I went through, I can really appreciate the benefits of biologic therapy.
Did you get psychological help in your problems?
Yes, I did get help from a psychologist. I enjoyed talking to my psychologist but then I asked myself: "Do I really need this?" I also consulted a psychiatrist. I had to calm myself down because I felt I could no longer cope with my situation, especially when my daughter was diagnosed with anorexia. She was at a hospital and she needed my attention, I couldn't focus on my own problems. Doctors say that patients who do not qualify for biologic therapy can take care of themselves at home, but that's not true. Managing psoriasis on your own is a great burden, you cannot live normally.
What is your current condition?
I've been on biologic therapy for 7 years. My skin is beautiful and I can't imagine it could be otherwise. When my biologic therapy started to work, my daughter bought my a very expensive nightgown and I still keep it as a symbol of my return to normal life. My biggest dream is to get funding for my biologic therapy. This is not just for me, there are people I care for. I have a wonderful granddaughter, she is 5.5 years old. When she was born, I cried because I was so happy and so anxious about the future. I will always think about it. My daughter is 40 now, she doesn't have psoriasis. When she had problems, she told me that if it wasn't for my psoriasis, she would probably kill herself.
What do you think is the biggest problem of patients with psoriasis?
Is it the lack of tolerance, lack of self-acceptance, or limited access to therapy?
I think lack of self-acceptance and limited access to therapy are the major challenges. In terms of tolerance, I often meet young people suffering from psoriasis who are outraged because they not allowed to use a swimming pool. In my opinion, people have the right to stay away from us. Even if they knew psoriasis is not contagious, it is still unpleasant to look at. Why would I make anyone uncomfortable at a swimming pool? I believe I should avoid situations where people would feel offended. That's why I wouldn't go to a swimming pool and I wouldn't be outraged if they didn't let me in.
Do you recall any situation when other people were tactless and inconsiderate?
No, never. But I do remember seeing a man with severe psoriasis standing next to me on a tramway. I felt very sorry for him and I realised I would probably have moved away from him if I hadn't known his condition was not contagious. That's why I understand the reactions of other people. I've learnt to live this way. I don't want to cause any nuisance.
Do you think psoriasis gets enough coverage in mass-media?
No. When biologics first appeared in Poland, psoriasis was more spoken of in the news. But I think it deserves more public attention. It's been a while since biologic therapies were introduced, and media are now silent on psoriasis. This problem should be discussed in every single medical program.
What is your advice to people with psoriasis?
That's a difficult question. I am much stronger now because I no longer have any skin problems and I find it hard to imagine what I would do if my psoriasis got worse.
Have you managed to stay optimistic despite your condition? Do you see any positive aspects of this difficult situation?
Yes, I do, despite all I've been through. I think I can appreciate and enjoy every moment of my life. I can sympathise and help other people, I can forgive and apologise. My biggest dream is that effective therapies are available without any limitations. If biologic therapies aren't reimbursed, I'm afraid I will be a nuisance for my family when I'm old and dependent on care.