So I haven’t written on this blog for a while and to be honest it’s because my psoriasis has been surprisingly calm for the last few months. Last time I wrote about how I was looking for different ways to manage my stress and that is exactly what I have done. Since January of this year I have been regularly practising yoga and while it might not work for everyone it has really made me feel much calmer and despite some dramatic events in my family life my psoriasis has stayed away.
Yesterday I attended the Psoriasis Association’s event at the Royal Society of Medicine about psoriasis in a series of events called “Medicine and me”. It was a meeting aimed at dermatologists, GPs and patients. What was probably the best thing about this event was being in a room with so many people who knew what psoriasis was, had it, or knew the difficulties in treating it.
As anyone who reads this blog will know, I like to take a pretty positive approach to my psoriasis. I’ve had it my whole life and was lucky to come from a family where it was identified and understood. What I found truly moving about the Psoriasis Association event were the stories of other patients. The first speaker had been diagnosed when she was in her teens and was now an adult woman who, after undergoing almost every treatment available, hoped she had finally come to accept that it was part of her.
The most moving speech of the afternoon came from a man who looked barely out of his 30s who had been diagnosed with severe psoriasis after a reaction to suncream. As he went on to describe the cycle of clearing and flare ups, his frustration at the lack of long lasting effective treatment and the lack of care he felt from medics for how it was effecting him and his life, I could barely stop myself from crying. This man hadn’t benefited from life-long knowledge of what the condition is and had it in one of its most severe, painful and upsetting forms. But I think the reason I wanted to cry wasn’t just from empathy, I think it was recognition of my own feelings of frustration with the condition that perhaps I haven’t always acknowledged. No one is there inside your mind late at night when you wonder if the scaly patches will ever clear, if what people tell you about it looking fine is really true and that sense of shame not just at the condition but that something so trivial as your skin can upset you so much. I heard a lot of people say yesterday, “I could have it so much worse”. But you know what, that doesn’t matter. Unhappiness isn’t awarded in the one “who has it the worst” competition. When you’re alone inside your head and you’re unhappy nothing else matters but your wish to have normal skin. Lovely, smooth, soft skin that doesn’t itch and feel like the enemy.
I think what I took away from the day was that – although new medicines are in the pipeline – some of which are very exciting, there is still a serious lack of understanding about how this condition affects you and your sense of wellbeing. I’ve never been asked how it makes me feel and I’ve sat in a GP’s office on the verge of tears demanding to be given a referral to dermatologist because I had convinced myself nothing but phototherapy would work. If you’re an outwardly strong person it can be very easy to lie even to yourself about how it makes you feel. The Psoriasis Association has some stark statistics about the mental health of people with psoriasis. What really concerns me is all this good work by specialists and the well-meaning isn’t reaching the despairing teenager and ashamed man who pass up opportunities or are made to feel dirty because of their skin.
Interestingly, the excellent work being done at The Royal Free Hospital under the guidance of Consultant Dermatologist, Dr Sandy McBride, seems to show robust results that underline what I suspected. Dealing with these feelings which add to the stress and exacerbate the condition can be the most effective treatment. The Royal Free clinic for psoriasis is encouraging patients to have counselling about their feelings about the condition. My route has been yoga which is a type of meditation and it has worked for me.
For many people at that event they were coming to terms with psoriasis being a part of them that couldn’t be cured. I think that is where we all need to get to. It’s not psoriasis and me. It’s me and my psoriasis, a part of me, but not what makes me.