Thought I’d open this old argument. There is a lot of rivalry with psoriasis, sometimes you see patients trying to outdo each other saying “Oh I had 50% coverage” followed by “Well I had 75%” and then someone else comes along saying “I had 85%, you know nothing (John Snow)”. That last one is usually me, I used to think I had the worse psoriasis going, no one had it as bad or has ever had it as bad as I did. Then I met other patients, read other patient’s stories and I realised that maybe I didn’t have it quite so bad. Yes is was severe but I wasn’t suffering as much as some people.
Now that I’m considered moderate I feel that I may actually have a tougher time of it than I did when 85% of my skin was covered (yes the 85%-er was me). Some of you may laugh at this and think, how can my skin be clearer and yet feel that I am worse off. It is quite simple, there is no treatment as such for me and here is why. When you have mild psoriasis, and by this I mean only a few small patches or just one patch, you have a multitude of creams to use and you don’t have to be covered in top to toe in greasy creams. You can pretty much get on with your life as normal and your psoriasis is an occasional irritation. Before anyone with mild psoriasis starts saying I don’t know what I’m talking about, I started with one patch on my leg so I have personal experience of such a mild case of psoriasis.
If you are unlucky enough to have a major flare up and become considered as having severe psoriasis there are fairly clear paths laid out. You go to your GP, you get referred and the options are topicals, biologics and light therapy. They will be prescribed by your consultant and supported (hopefully if your hospital is good). Yes it is a really bad place to be in, I have been there and literally was tearing my skin off in desperation. The thing is, you can get treatment easily because your skin looks so damn bad.
So after having all the hospital treatment, your skin clears and slowly the psoriasis comes back. You are able to manage it to a degree but it bothers you because it’s covering a fair bit of your body, most of your lower legs, patches on your arms, back and scalp. It means that the topicals are being used up pretty quick and you’re back to feeling sticky. What happens now? You can see your GP, which I do, and get some more creams and ointments. Your GP may even contemplate referring you but your GP knows that he hospital will turn you away when you get there. They will say, sorry, your skin looks okay to us. It looks okay? Well thanks, it may look okay to you, but it looks pretty bad to me. So it is okay to have nights interrupted with itchy skin, it’s okay to not want to wear short trousers or sleeves in public, it’s okay to feel sticky and greasy, it’s okay to leave a pile of dead skin where you sit and feel embarrassed? I guess then I shouldn’t complain as everything is okay.
I refer to moderate psoriasis as the black hole of psoriasis. You don’t really fall into any specific section. Your skin is too severe for your GP to really do anything about and you’re not severe enough for the consultants to spend their time on. The moderate psoriasis sufferers are like the forgotten people. We may as well be told, come back when your skin is worse, we’ll be happy to help you then.
Surely if we stop psoriasis getting worse at the moderate stage it would save time, money and people’s mental well-being. Why do we need to have severe psoriasis to be taken seriously? If someone breaks a finger, the hospitals don’t turn them away and say, sorry it’s not that bad, come back when it’s your arm. Anyway, I have the worst case of psoriasis and so do all of you. We have psoriasis, it’s bad at whatever level you have it.