"Little is said about psoriasis"
Can you have psoriasis and still be an optimist? Yes, of course. Unfortunately little is said about psoriasis, while false beliefs and stereotypes about this condition are still widespread (for example, the false belief that psoriasis is contagious). Psoriasis does complicate your everyday life and social interactions. In our conversation, Wojciech Wilkowski confirms that psoriasis can be a devastating experience for some patients. How can they avoid intolerance and lack of understanding?
When did you learn you had psoriasis?
I was on my second year at a university, about 22 years ago.
Have you had any other cases of psoriasis in your family? What did you know about this condition back then?
I was completely ignorant. I didn't know anything about psoriasis. I thought I had a more serious form of dandruff. My friend told me that I had psoriasis, his mother suffered from the same skin condition. This was in 1992. I had no information about psoriasis, apart from what my doctor told me. The treatment methods used in psoriasis left much to be desired. There were no other options available except for smelly emollients, steroid ointments, and long-term hospitalisation.
What was your reaction to the diagnosis? What symptoms did you have?
When my doctor told me I had psoriasis, I only asked: "OK, but what is psoriasis?" He didn't have much to say. When I ended up in a hospital, I was told psoriasis was an incurable and life-long condition. The Dermatology Department was a nasty place to be. The smell of ointments was omnipresent, there were scales all over the floor. I told myself I would never go to a hospital again. Unfortunately I had another flare-up just a week after I was discharged.
What were your first symptoms?
I had dandruff-like flaking. My scalp felt as if I was wearing a scab helmet. I didn't want to shave my head, but otherwise it was difficult to manage my symptoms. I also developed mild skin manifestations on the back and elbows. These were small spots the size of a coin.
Your psoriasis started during your studies. How did your friends react?
My friends quickly accepted my condition, but my appearance definitely influenced my social life and the general well-being. Psoriasis had a profound impact on my plans for the future, I had to give some of them up. In hindsight, I see that I've made a mistake, but back then it seemed like the most reasonable choice. Especially in my case, when psoriasis continued and was relatively intense.
How did your family react?
My relatives tried to be supportive of me. They came up with various therapies. I had various baths, sea algae treatments, I drank water with algae residues, I used aloe juice and exotic imported ointments. I guess I've tried all conventional and unconventional therapies. Unfortunately, none of them really worked.
Has your condition influenced your career?
Yes. During job interviews I would tell my prospective employer about my condition, that I sometimes had to spend a month at the hospital (this is what psoriasis therapy looked like back in 1990s and in the early 21st century). Finding a job was really difficult. When you have visible skin manifestations of psoriasis, some career paths are unsuitable for you.
Have you experienced any unpleasant reactions to your psoriasis?
Yes, I have been in some very unpleasant situations, especially when I had nail psoriasis. Once I heard my friend saying nasty things about the way I looked. My other friends didn't know how to behave. They felt uncomfortable about this guy's behaviour.
Have you been hesitant to go to public places, like a hairdresser's?
I had a really big problem with going to a hairdresser's. Some of the hairdressers I visited refused to cut my hair. I was always afraid people might frown upon me. This is hardly surprising because people generally believe psoriasis is contagious. However, somehow I have always managed to find a hairdresser who didn't mind my condition. Over the past few years, awareness in this profession has improved a lot.
Do you remember any particular situations associated with your psoriasis?
I was once on a tramway in Bydgoszcz and the ticket inspector refused to take my ticket when I handed it over to him. He backed off when he saw my hand. It was very embarrassing and unpleasant because many other people saw his reaction. I tried to avoid similar situations to save myself from such reactions.
How have you coped with negative reactions to your disease?
In general, I know my value and if someone doesn't accept the way I look, it is their problem, not mine. I have no intention of convincing anyone against their will. If someone has a problem with my psoriasis, I won't force myself upon them.
Have you had any moments of doubt, especially when your therapy didn't work?
I once lost hope in the entire world and felt nothing could help me. I gave up on my therapy. Once in a while a friend of mine, who is a pharmacist, gave me various ointments. But my despair couldn't last forever. Skin is a very important organ and I eventually went to see my doctor to try to control my disease.
What is your current therapy?
Currently I am at the mercy of the National Health Fund, NFZ. I can function normally as long as I have my therapy partly refunded. Then I can forget about my psoriasis. For the time being I have my therapy co-funded by NFZ and a pharmaceutical company. But I am very anxious about the future. In 2009, after I took several doses of therapy, I was denied funding and I had to discontinue my treatment. After 6 months I qualified again for biologic therapy (this is the only treatment with which I can control my symptoms). Unfortunately I haven't been on any therapy for over a year now – the criteria established by NFZ are difficult to comprehend and too strict for me to qualify for.
Do you think psoriasis gets enough coverage in mass-media?
Little is said about psoriasis. But I think we should not complain about intolerance and misunderstanding because our society is increasingly aware of people struggling with various diseases. I still experience some unpleasant situations but these are isolated cases in which people are rude and unthoughtful. It is now generally known that psoriasis is a disease that involves serious lifelong consequences in everyday life and in social interactions, instead of being a mere skin condition. When psoriasis is accompanied by arthritis, patients have mobility problems; they are unable to go to work and live off of disability allowance. But people do want to be a part of society. Today people worship beauty, and psoriasis makes live really difficult.
What do you think patients with psoriasis need most to improve their quality of life? Is it about money or raising social awareness about the disease?
Both - it isn't enough to raise social awareness. People in my town might learn more about psoriasis, but what would that do? I would still need money for therapy. People should know why so many of us don't have access to new, more effective therapies.
Have you managed to maintain a positive attitude, despite your condition?
Definitely yes. I always stay positive.
What is your advice to people with psoriasis?
It depends on your mentality. Some people try to be optimistic and are able to distance themselves from their disease, others need psychological help. Unfortunately psychological assistance is very difficult to get. Just imagine how hard it is for a 15-year old girl to accept her skin condition. All actresses are now so beautiful, well-dressed, forever young, and the way you look really defines your life. These are the values promoted by media, the most important trend-setters. First of all, people with psoriasis should remember that psoriasis is not the worst thing that can happen, and that there are many other important aspects of life, apart from looks. You have to keep calm and perceive yourself and the world from a distance; you should also follow and use the latests developments in medicine.