I’m 28 years old and I’ve had psoriasis for as long as I can remember. There was never a moment where I saw a red scaly patch and wondered what it was, as I always knew I had this thing called psoriasis. Luckily for me, my three sisters all had it too; and my father is a doctor. They all always reminded me, “it’s not catching; it’s in your genes”. However, explaining genetics to other kids at primary school is not one of the easiest tasks for a little girl.
This blog won’t give you the secret to making your psoriasis clear up, I’ll leave that to the professionals, but hopefully what I can do is share with you my experiences over the years and let you know that you aren’t alone and that you shouldn’t feel ashamed or embarrassed at having it.
So let me tell you a little bit about me. I have what is referred to as guttate psoriasis which affects the back of my arms, my knees and torso. I also have it on my scalp, hairline and a few patches on my face. The severity of it has varied over my life, but I can’t remember a time when I didn’t at least have a little patch of it. I’ve tried all sorts of treatments, all the creams, the lotions, the coal tar products and have twice had courses of UVB light treatment.
I’ll tell you all about my experiences with medical treatments and the things I use now to try and keep it under control in later blogs, but in this first blog I want to talk about how it feels to have psoriasis. If you are someone who has just found that you have psoriasis, whether you are a teenager or middle aged, hopefully reading about my experiences might help in some little way. If you know someone with psoriasis, this blog might give you some insight into how they feel.
Let’s start with the obvious. Firstly, it’s itchy. My goodness is it itchy! When the seasons change, like they are now, your skin gets really dry and tight-feeling and it can feel like you want to scratch yourself raw. Something I used to do a lot when I was younger. A tip for friends or family – do not suggest having a hot or cold shower. The water dries your skin even more and just means moisturising all over again. Secondly, it can make you feel extremely self-conscious. I still find myself staring enviously at people with smooth, soft skin. Wearing a dark colour and seeing the white specks of skin sprinkling the material, is like your own natural supply of natural glitter. But let me tell you, it’s not as obvious to people as we think it is.
The first memory I have of my psoriasis being noticed was when I was about 9 years old. My friend and I were playing and she asked me what it was. I said psoriasis. The next day my friend said her mum had told her to stay away from me in case she caught it. Unsurprisingly, I was very upset and a little confused. I told my sisters who all shouted “it’s not catching; it’s in your genes!” There followed a rather confused family conversation about the difference between jeans and genetics. The next day I proudly and I’m sure with unbearable smugness told my friend about the correct type of genes. I’m pretty sure my own mother explained my flaky condition to my friend’s mother too. We stayed friends until we went to separate secondary schools.
Psoriasis, while hardly rare, (it affects about 3% of the population) it isn’t as common as eczema. We all know when people are confronted with something they don’t understand, the first reaction is usually fear. If you have psoriasis, or your child, spouse or friend has it the best thing you can do is understand what causes it and be ready to explain it.
I know I’m lucky – my type of psoriasis is relatively mild – I don’t have the more severe forms. But the best thing you can do is learn as much as you can about psoriasis and if some insensitive person does point it out then blind them with your superb knowledge of the facts. As my sisters told me, it’s not catching; it’s in your genes!
Jenny
Jennifer White is a public affairs consultant who specialises in health at Lexington Communications. She has had psoriasis her whole life and is keen to share her experiences with others in the hope it might help them feel better about the condition. She regularly tweets on health policy and can be followed @JOCWhite.
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I have eczema so can really relate to your comments above. It’s so frustrating when people say, and they do, all the time… “gosh your face is really dry, red, scaly, sore looking, (delete or use as appropriate) have you ever thought of using more moisturiser? Going to the doctor? Looking after your skin better?” How rude! To which, I wish I had the guts to reply, “Yes it is red, and it is painful, but sometimes it goes away, unfortunately you will always look like that!” Instead you find yourself apologising for ruining their view. I’ve been asked why I don’t wear makeup to cover my eczema! Honestly! Great blog post. Keep it up.
on November 23, 2011 at 5:59 pm Ruth