Psoriasis: Effect on daily life and getting treatment
13 Jun 2018 • 4 comments
@magicmick who has had psoriasis all his life, tells us about how it has affected him at different stages of his life. Having had trouble receiving proper treatments for a long time, he advocates for the information on psoriasis treatments to be available for every patient, no matter how advanced their psoriasis is.
Hi magicmick, can you please introduce yourself in a few words?
Hi I am Mick, a male. Born 3/9/1960 and I have suffered with psoriasis all my life.
How did your psoriasis start? Were any of your family members affected as well?
I have had psoriasis all my life: it started as cradle cap as a baby and then I got it on my knees and elbows and hands. At that time only my grandmother had it slightly, though my aunty did have lupus. Back then in the 60s it was known as a socially acceptable complaint, though at that time there was little known about the condition and I received no treatment from the doctor or the hospital for it. Just coped with it.
How did psoriasis affect your childhood and your teen years?
It affected my childhood and teen years in so many different ways. When really young, none of the other kids would want to play with me, they called me scabby and treated me like an alien. I remember at the time feeling like a monster.
It got even worse when I first started school. Even the teachers would sit me alone at the back of the class and avoid contact with me. Back then kids wore short trousers so all my psoriasis was on show. I remember going home that first day and saying to my mother I didn't want to go back. My dad said I should just ignore them.
In the end I became tougher and when they called me scabby, I would just beat them up all the way through infants and junior school. I tried to become the best at sports, best everything. I did just so I would fit in.
Eventually after a few years and them getting to know they could not catch what I had I was accepted by some. I remember the day we first went swimming. We would go with the school. Me, I had to get a doctor’s certificate stating that it was ok for me to go in the pool with the others. Of course once I had learnt to swim I wanted to go to the public swimming pool. Again there I was asked to leave until I got a doctors certificate saying it was not a communicable disease. By the time I went up to senior school most I went with knew about my psoriasis but there were odd occasions I saw the look of dread mixed with pity, even when accepting change in the shops people would stare and looked shocked.
When I left school and started looking for work again I would apply for jobs and be told I could not do them because of my psoriasis. Some just rejected without any explanation. I remember trying for the army, then the navy, then the air force. I even applied for the police and was rejected by them all just because of my skin.
Eventually I did find some kind of work, but only as a labourer, or taking the jobs no one else wanted to do. Oh I had many qualifications, but that didn't matter as all they saw was my psoriasis, not the person underneath. Even the job centre treated me more like a second class citizen. I think from the ages of 15 to 18 I applied for hundreds of jobs but got only silent rejections. It was hard both mentally and physically and I always felt like a monster deep inside.
How has your psoriasis treatment plan evolved over time? Have you tried many different medications?
It wasn't until I had a car accident at the age of 20 and broke my spine that I began having treatment for my psoriasis. Back then it was only creams like Betnovate, and coal tar shampoo. That was the first time also that I saw a dermatologist.
For a few years all they would give me was the creams but it did no good, it never eased it. Then I was offered the oral treatments: first Acitretin, this took it away within a matter of weeks, but after 6 months my body had built up a resistance to it and the psoriasis came back even worse, and I was diagnosed with psoriatic arthritis.
Then they gave me Methotrexate. Again this cleared it up but over time the side effects, like the sickness and the muscle aches and the headaches just got worse and worse: my body was fighting the treatment, and again my psoriasis flared up worse, so they put me on cyclosporine. The side effects of this drug were not so bad and it completely cleared up my psoriasis on and off for 25 years. I would take it for 8 months then have 4 months off it to allow my body to build back up again. Over the years my immune system became weaker and weaker until I developed an inoperable brain tumour. They called it dense calcification of the pituitary stem and hypothalamus. This deals with the hormones of the body so it affects the systems of the body. Least to say, once discovered I could no longer take the treatment for my psoriasis.
Have you tried any alternative remedies for psoriasis?
Yes, I have tried homeopathic remedies like bee pollen and various diets that were said to help to ease the symptoms of psoriasis, but none of them really worked or eased the condition.
You have other chronic conditions. How do you cope with treating them at the same time as your psoriasis?
Yes, I have psoriatic arthritis, COPD, spondylosis of the spine, migraines and, after breaking my spine twice, I am wheel chair bound.
I use Paracetamol and codeine for the pain and I am at the moment using Enstilar in a spray foam for my psoriasis.
How has psoriasis affected your daily life and your lifestyle in general?
My psoriasis does affect my daily life in so many ways: the constant treatment regime, then the flaking of skin, the dryness, and soreness, and cracking, and bleeding. When out I wear gloves and avoid being in the sun too long. People’s reactions have not changed much from when I was a child.
The psoriatic arthritis gets steadily worse. I can’t have any replacement joint operations because they are seen as not viable to succeed. Even where I had my spine surgically repaired, psoriasis has developed on it.
I never go on holidays and I avoid people and places. I have avoided having relationships because I’ve never found anyone who understands my condition or accepts it.
What do you think about the medical care you have received for your psoriasis?
To be honest, I think the medical care could be made easier to obtain for all, not just some. Some of the treatments are withheld unless a person’s body is covered 80% with psoriasis. I think the medical profession should stop calling it a disease and start calling it a condition of the skin.
I think it’s time there was more information given on the types of treatments available. It’s time the drug companies did more tests, not just on animals but also on those who have the condition. Ultimately it’s time that a cure for psoriasis is found, one that does not involve using cancer drugs or anti-rejection medication.
Do you think talking to other people affected by the same medical condition is beneficial to you?
Yes, I do think talking with others who have the same condition is very beneficial because they know what it is like coping day to day with it. And talking with those who don't have the condition, getting the clear message out there that it is not contagious and only affects the sufferer, might go some way to expelling all the myths about what psoriasis is, like they are doing now with mental illness, bringing it out into the open, talking about it and understanding it. Not hiding it. It is time also that the government accepted that psoriasis is a life disability.
What would you advise other people who suffer with psoriasis?
I would advise them to be open about it, to seek the best treatment they can and work together with the dermatologist. To not be ashamed or feel as I have in the past about it. To have hope and take each day as it comes.