Click here for COVID-19 (coronavirus) advice for people living with psoriasis and psoriatic arthritis.
Tom shares his experiences of school and university life while managing his psoriasis and seeking an effective treatment regime.
Hello everyone! My name is Tom, I’m 23 and I have psoriasis. I was diagnosed with psoriasis when I was 18 but in hindsight I think the signs of the condition were there from a much younger age…
I was fortunate enough to go to a wonderful school with a fantastic ethos surrounding education and involvement so I never really suffered from bullying or name calling. However it was very apparent to all that I had particularly bad “dandruff” often showing up very prominently on my dark uniform. Despite the inclusive and friendly nature of school I still felt that I needed to brush off the flakes at regular intervals to prevent people thinking it had been snowing outside! Even though there was never an issue it was something I was very conscious of, especially when people were offering advice on shampoos and methods for tackling it. Nothing seemed to work, and I remember wondering why I seemed to be the only person who also had dandruff in my eyebrows.
Being a typical teenage boy, I didn’t really care about my appearance. I rarely used to stare at myself half clothed in the mirror, so it was only when on a family holiday (aged 16) in southern Italy that my Mum noticed a small red patch developing on my lower back. Being the “doctor phobe” that I was I didn’t really listen to Mum’s concerns as it wasn’t affecting my quality of life. It did start to become itchy though, especially straight after sport but I left it, hoping it would disappear.
In my final couple of years of school, the patch grew larger and larger and I started to feel self-conscious about taking my shirt off. This was a big problem given I adore sport (especially rugby) and so getting changed for rugby, swimming, water polo, athletics etc. did become a little awkward for me. I bottled it all up and didn’t speak to people about it, constantly hoping it would all just go back to normal (whatever normal is). Although a little self-conscious, my school days were brilliant, and the psoriasis hadn’t really shown itself yet. Retrospectively though, the warning signs were there.
Aged 18 in my first year of University was when the real problems started. Whether it was the general stresses of leaving home, beginning a new part of my life, or the excesses of my newly found love of alcohol, in the first term of university I had my first “flare-up”. Initially I kidded myself the little red patches that were developing on my body were from rugby and the general grazes and knocks that come along with the sport, but when my scalp and face started to become red, sore and itchy I knew there was an issue. Some of my fellow players thought it was “scrum pox” from rubbing my head on others in the scrimmage and mauls but I thought it was time to seek medical advice.
I was almost immediately diagnosed with psoriasis and the doctor gave it to me straight. “It’s a condition that has no cure and you’ll have it for life. It’s just about managing it." Although it was great to have a diagnosis, it really knocked me. I can remember phoning home quite upset knowing it would be a constant presence in my life and feeling very insecure. I felt quite isolated not knowing anything about the condition or anyone else with it.
After this diagnosis my skin only seemed to get worse with various creams and gels seeming to have little or no impact. I started reading about it online and cutting things from my diet (with varying results). One time in the summer of first year my skin cleared up for a few months (when I was in Australia) but then the psoriasis came back worse than ever before with reddening of my skin and scaly, flaky plaques appearing on almost 50% of my body.
This rollercoaster of treatments and flare-ups continued through my second and third years of University and it was quite a difficult time for me. There were good times like playing rugby and enjoying beers with my friends, and I was always lucky enough to meet lovely and understanding girlfriends. However, there was also lots of awkward times in my studies and my personal life especially with people commenting on how sunburnt I was or cracking jokes about my skin. Often, I think it was because of a lack of understanding rather than with any real intent, but their words did hurt, and I did feel extremely self-conscious of how I looked. My family and friends at this time were superb and especially amongst the boys I lived with were very understanding. However, outside the house I became a bit of a night owl. As obviously at night in dark clubs and bars etc. you couldn’t see my skin, so I felt more confident and I felt I could act like everyone else and this was bizarrely where I felt most comfortable. Obviously that’s not really how you should live.
At this point I started making friends with some more people who had the condition at University and started to really engage with the literature online surrounding other people’s experiences. I found reading about other people really helpful and it allowed me to have the confidence to start talking about it more myself. The reason I’m detailing my experiences for the Psoriasis Association’s ‘50 for 50’ is because I know how valuable reading other people’s experiences is to me and I hope that with increased awareness and exposure everyone suffering with the condition will get some confidence, the way I did. It’s no secret that poor mental health is linked with psoriasis and anything that can be done to reduce this impact, through exposure and education I fully support.
Now the good part…
Just as I was finishing my first degree I finally found the right treatment for me and this was a massive turning point in my life. The Enstilar foam is something I use almost daily, and it is the right treatment for my skin. All the plaques decreased rapidly just from my first treatment and even if I have a bad flare up it softens their appearance. Having a skin condition like psoriasis that is so visual can be very damaging to your self-esteem and mental health so finding something that worked for me was incredible and I couldn’t be more thankful for every day that goes by now with my skin looking like everyone else’s. I think the plaques are often magnified in our own heads when we have flare-ups but to have something that I can use to combat them makes me far more confident and I think that’s what it’s all about. Being comfortable in your own skin. My final year at University was fantastic and after lots of peaks and nadirs it was great to leave University on such a positive note doing all the things I love doing surrounded by people I love.
Finishing University earlier this year meant now having the time to commit to UVB treatment, which I’m currently undergoing. When I was in Australia my skin improved vastly so the Doctors thought UVB would work well, which it has. The light treatment is working wonders with my skin and especially in regions that are harder to manage just with my Enstilar. With the UVB, Enstilar foam, and confidence I now have talking about my skin, I couldn’t be happier. Almost the exact opposite of how I felt a few years ago. My skin now looks fantastic, but even if in the future I do have flare-ups I hope that with the increasing exposure and education on the condition that hopefully people who also have psoriasis (and other skin problems) will find the strength to manage it and become confident in their own skin.