My psoriasis journey
Its psoriasis awareness week and thought it would be timely to share my journey with the skin condition. I know psoriasis can bring anguish, stress and often depressive thoughts. My psoriasis journey has not been an easy one and often has had its emotional and depressing times. My journey started when I was 13 after my BCG injection. The psoriasis started on my hairline and soon spread over my scalp. That’s when the jokes at school about my dandruff started. I was already picked on and now I had something else for my peers to laugh at. I spent a lot of time wishing I could get rid of it. I used to sit in my bedroom with a comb and scrap out the flaky bits in the hope it would disappear. I just ended up with a head full of open wounds.
Psoriasis and stress
Whilst sitting my O’ and A’ levels I found psoriasis is linked to stress as it started appearing on my body. I tried my best to hide it. I could not be a normal teenager wearing skirts or topless tops. I even could not have my ears pierced or wear make-up. It felt I was the only one who had psoriasis and no-one really understood what it was like having the skin condition.
When I went to University I found another sufferer. What a relief! I was not abnormal. I lived my 20’s accepting the condition. My psoriasis was in small patches and just stayed in small isolated areas.
Psoriasis ‘flare ups’
I lived in Africa and the sunshine kept it away from my face, arms and legs. One day I did my hand washing in my swim suit and badly burnt my back. That’s when I discovered what a real ‘flare up’ of psoriasis was. The whole of my back turned into psoriasis. Obviously my back was covered by clothes so there was no need to worry about embarrassment. I would have preferred the embarrassment over the pain I endured. It cracked, it bled and it was painful. Even sleeping was painful and in the morning my bed would be covered in flaky skin. I was in the middle of an African village with no transport and there was little I could do about it. I suffered in silence for a couple of months until I came back to UK.
Psoriasis and UV treatment
The next couple of years my psoriasis was stable and I continued my life as an aid worker. I stopped using topical treatments as I discovered that although they made the patches disappear, the psoriasis would return twice as worse. Returning to the UK in my 30’s was a culture shock and I found it hard to adapt back to Western Society. That along with a stressful job brought on another flare up but this time it appeared all over on my face and legs. I can still remember people’s expressions when they saw my face. I felt ugly. My GP referred to Hallamshire dermatology unit where an empathic consultant offered me light treatment. For 6 weeks, three times a week I had to visit the hospital. At the end of the treatment I was psoriasis free on my body. The first time in 20 years. I felt liberated.
Being psoriasis free lasted 6 months and it slowly came back but in small patches that I could hide.
Being a new born Mum with Psoriasis
After my first born, I started breastfeeding. This in turn brought out psoriasis on my breast. It was manageable with the first child but with the second one it soon spread to affect the whole area. Every day breastfeeding was painful. I kept it quiet. I don’t know whether it was due to knowing people would not understand or embarrassment.
Psoriasis and tonsillitis
After the birth of my second daughter I had a winter where I kept getting tonsillitis. I was ill and depressed as I got little support or understanding from my friends. After 5 bouts of tonsillitis I was better. However, my psoriasis responded by ‘flaring up’. It was my biggest flare up and not one part of my body was missed out. This time was different. I was determined not to let it get between me and my children so I carried on a normal life and went out with them. It wasn’t easy especially when I saw people’s faces and their reactions. It was not a pleasant experience. The part I remember the most was the pain. It cracked and it bled. Clothes irritated the psoriasis and sleeping was painful. My children, my husband and a couple of friends got me through that experience. My children and husband still loved me although my face and body was not pretty.
My next battle started 3 years ago being told I had psoriatic arthritis. In my next blog I will tell you more about that and I have learnt to manage both conditions.
The hardest part of psoriasis is people not understanding the emotional and social impact. It does affect your mental health and your confidence. We are told it looks unattractive so we react by hiding it. Psoriasis is painful, so why should suffer socially from it too? And remember beauty comes from within!