Learning to live with psoriasis
Why is psoriasis socially unacceptable? This condition is not contagious, so where does the social intolerance come from? There is so much left to be done in terms of raising social awareness about psoriasis. The story of "Learning to live with psoriasis" demonstrates the rejection and stigma people with psoriasis face at school, at work, in public places, or at swimming pools, etc. Małgorzata Miszewska tells us how to cope with psoriasis in everyday life.
When did you learn you had psoriasis?
I was diagnosed when I was 14. Back then, I didn’t pay attention to my condition. I didn't see it as something that would stick with me for the rest of my life.
What were your symptoms like in the beginning?
First, I noticed several small spots on the skin. After a few days, there were plenty new ones. They diffused 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? What did you know about this condition back then?
When I developed psoriasis, my father recalled his grandfather having similar skin problems. They suspected his disease had something to do with exposure to fertilisers or an allergy. Nobody knew anything about psoriasis.
How did your family and friends react to your condition?
My family wasn't very concerned, perhaps they didn't realize what psoriasis was really about. We all believed that I'd be fine as long as I used the prescribed ointments. Even my doctor didn't tell me psoriasis is in fact incurable. It was not until 2004 that I became interested in psoriasis because my symptoms got worse.
How did your friends from school react? Did you feel discriminated?
I developed the first symptoms when I was at primary school. My friends didn't pay much attention to my disease back then. I used steroid ointments so the skin symptoms came and went in cycles. However, with time the disease-free periods became increasingly short. I had spots on my arms and legs. Later on, I also didn't worry too much about it. I just knew I had to get up early to apply ointments before I went out. It is only in recent years that I started to pay more attention to my condition and worry more about how it has changed my life.
Do you recall any memorable event in your life associated with psoriasis?
People often stared at me and talked aloud about my skin condition. I think they were curious. When I went to Croatia, the reactions were quite different. I was approached by a stranger who told me in English: "O dear, what happened to you, what's wrong?" "I have psoriasis", I explained. "Oh, I know. My aunt also has psoriasis. I hope you get better", she replied and stroked my hand which was covered with plaque.
In Croatia, nobody stared at me. I remember one incident. I had a team-building trip to Egypt. We had a diving course and I had to wear a swimsuit. Our guide asked me what was wrong with me. I said I had psoriasis. He asked me if it hurt, and I said I was fine, explaining my skin just looked strange. I had a really great time during this trip. The sun was shining so the condition of my skin visibly improved.
On my return, I learned that a relative of my boss who didn't attend the trip said to my manager: "I was told Gosia has some kind of skin condition". Later I learned my boss was talking about me with her friends, behind my back. That was very unpleasant.
How has your condition influenced your life? Do you still go to the swimming pool or a hairdresser's, do you visit a beautician?
I felt very embarrassed when I once went to a swimming pool in a skimpy swimsuit. They say "it's all in your head". But I don't want people to stare at me. I'm scared of being rejected... Apart from that, I've been lucky to meet very professional hairdressers and beauticians. I was once asked by a beautician if I had psoriasis. I confirmed and she told me she had another client with psoriasis. We started talking about this. She told me a story of a woman whose flare-ups were triggered by stress. Her psoriasis started on her soles. Her skin was so cracked that she couldn't walk.
I once went to a hairdresser who disinfected the entire hair salon after I left. But I also remember many positive reactions. When I was a girl, I used to go to swimming classes. I needed a swimming certificate to apply for a sailing licence. My doctor gave me a medical certificate confirming I have psoriasis and could use the pool, but everybody knew that my skin problem is not contagious anyway so the certificate wasn't necessary.
How have you tried to conceal your disease?
One day, when I was sitting in the waiting room at the dermatologist's, I realised that the other patients were all concealing their condition. There were several dozen patients in the waiting room, but nobody had any signs of psoriasis. They all looked perfect, women wore full make-up. I myself wear proper clothes to hide my skin lesions on my arms and legs. I wear long trousers, long-sleeved blouses, skirts only with tights. Before I travel, I feel I have to plan everything to take appropriate clothing choices. Sometimes I decide not to go on a trip because I do not want to feel embarrassed and spoil the fun. My partner, who also has psoriasis, doesn't understand why am I afraid of being judged. But the sense of shame and stigma is deep within me and affects my decision-making.
Did psoriasis change the way you think of yourself as a woman?
Yes, definitely. When I go to a lingerie shop and try things on, I ask myself if I really need this stuff because I look so awful.
Do you think your life would be much different if you didn't have psoriasis?
I think psoriasis has had a profound influence on my life. I have given up many things. For example, I didn't pursue my childhood passions. I experienced several situations that affected my career. When I'm stressed, my skins begins to itch and flare. It is a vicious circle. Stress means exacerbation of symptoms, which causes even more stress.
I had a valid employment contract until December, but in October I told my partner that I wanted to resign. When my contract expired (and was not extended), I woke up with a smile on my face because I knew I no longer had to go to work. I felt relieved. I was unemployed for a while until I started my own company with EU funds. I worked for myself. It wasn't always so colourful, but it was better. I closed my company 3 years later, I was diagnosed with depression (which apparently started years before). I found a job after a few months.
In the meantime I finished a post-secondary school with flying colours (I have a university degree but I feel that I have to continue to study). I've been attending an annual course in drawing and painting since February, I want to develop my skills in this field. I lose all track of time when I create or paint, I lose myself in it and relax. I can paint for a few hours and I never feel tired of it. In November 2013, I took the challenge and wrote my first novel (a story of min. 50 thousand words, according to the American definition of a novel) under the Write a Novel in November campaign. It was never published but I really enjoyed the process, and what’s even more interesting – inventing a plot has taught me to solve many everyday problems.
Generally I feel that I am now beginning to discover what's hidden deep within me but had been suppressed for years of living with psoriasis and depression. I feel more self-confident, I do not want to come off second best, I learn to show my emotions.
How did you cope with the most difficult moments of your disease?
You can never fully accept your disease and turn it into an asset. This is impossible because of the skin manifestations of psoriasis. Men don't worry so much about their looks. Women want to look perfect. A friend of mine wrote on her blog that she feels miserable each time she hears on TV that it is the skin that makes women beautiful. How can I be reasonable about my disease when I hear that my beauty depends on the condition of my skin. There were times when I didn't care about my psoriasis. Once in a while I get out of the shower, I look at myself and ask myself: "Why can't I wear a miniskirt and heels? Why do I have to wear trousers and long sleeves?" I have been living with psoriasis for 22 years. Some people might think I should have gotten used to it by now. I haven't... I admire people who suffer from psoriasis and are brave enough to dress differently. I am still learning.
What did you do in moments of doubt?
I find it difficult to talk about my condition. My disease is a taboo that I hold deep within myself. My partner also has psoriasis, but he has a totally different approach to it. He just doesn't care and cannot understand why I feel embarrassed or ashamed. When it's hot, my friends tell me to take my sweatshirt off. They support me, but I can't talk about it. I think anyone suffering from a chronic condition should get help from a psychologist. Sadly, treatment of psoriasis in Poland is focused on the skin, not the mental condition of patients. Dermatologists are preoccupied with ointments, but doctors should talk to people who have received a diagnosis that turns their life upside down. A women I met online once told me that I taught her more about psoriasis during a 15 minute online conversation than she ever learned from her dermatologist.
They say psoriasis is a disease of the body and the soul...
Yes, that's right. Psoriasis increases the risk of stroke and myocardial infarction, depression, alcohol addiction, etc. A few years ago, a 24-year-old man suffering from psoriasis died of a heart attack.
What do you think is the biggest problem of patients with psoriasis?
Ignorance, intolerance, lack of access to treatment?
All of these things. Modern therapy is not easily accessible. I attended various awareness-raising meetings. I learnt biologic therapies are easily available worldwide, even in Romania, a country with a relatively poor economy. In Poland, access to biologic therapies is restricted to drug programs with strict qualification criteria. Also, ointments are expensive. 10g ointment tube costs dozens of zlotys and doesn't last for long.
A friend of mine who was qualified to a biologic therapy (under a pilot research program) told me that she can now finally live normally. I was once approached by a journalist. Her son was recently diagnosed with psoriasis. He had a nervous breakdown, quit his job, but received no outside help whatsoever. One of my friends has psoriatic arthritis. A mother of four, she has had both hips replaced, but her hands are so deformed she can't even hold a glass. Just think of all the people benefiting from invalidity allowance because of psoriasis. If they had access to a biologic therapy, perhaps they could work normally.
We once distributed leaflets about psoriasis and 9 out of 10 persons we approached in the Polish Parliament believed psoriasis was contagious. We explained: "No, psoriasis is not contagious". This is how psoriasis is perceived in Poland.
Do you think psoriasis is still a taboo in Poland?
Information about psoriasis is easily accessible. People don't want to learn more; they don't read. However, I think more and more is being said now about psoriasis. There are associations of patients with psoriasis; it is discussed in the media from time to time. Still, the problem of psoriasis does not draw the attention it deserves. Nowadays, the cult of beautiful bodies distorts the real picture of a human being. When I worked at a university, one of the physiotherapy students refused to practice with a not-so-good-looking guy, explaining she wanted to work at a spa. The lecturer asked her: "Do you think you will always work with beautiful, athletic people?"
Have you managed to remain optimistic despite your condition?
As they say, every cloud has a silver lining and you should focus on the positive. Sometimes I think: "Ok, I am ill, I must stay in bed, so I can get some sleep and read books." I'm happy that I have real friends. My disease has made me realise which people are worth my time.
What is your advice to people with psoriasis?
You shouldn't get trapped within four walls day after day. You should go out and meet people, including other patients suffering from psoriasis. Do not hesitate to ask for psychological and psychiatric care. It will help you sort things out and discover that life has so many beautiful things to offer. Remember that depression is a disease commonly associated with chronic conditions. It is often neglected, just like the need for social acceptance, which we so often deliberately deny ourselves, ignoring our own needs.
Photos: Sebastian Wolny | www.sebastianwolny.pl | e-mail: firstname.lastname@example.org