Living with psoriasis. Are you MAD?????

psoriasisPsoriasis is hateful.

I developed it as a young teenager, just what I didn’t need at a time when my body was already going through some huge and alarming changes.  I’ve spent my life since in a battle against psoriasis, seeking out new tactics to beat it into submission and most often going undercover; hiding my skin away from the world, pretending to be normal while all the time, under my clothes, I’m plastered with red hot patches of skin, sore, flaking and peeling.  It’s been a long, hard campaign and in reality my enemy doesn’t even exist.  It’s just me fighting me.  At times I’ve felt very low and I’m not alone.

So many people with psoriasis suffer with clinical levels of anxiety and depression.  People with psoriasis can even feel suicidal.  I understand this.  It’s a difficult condition to live with; painful and unsightly and in a world where appearance is so important, it’ easy to feel disgusting and ashamed.  It’s hardly surprising this would affect your mood.

A review ‘Psoriasis and Associated Psychiatric Disorders’ was recently published in the Journal of Clinical and Aesthetic Dermatology.  The authors reviewed research papers published between 1990 and 2015 looking at psoriasis and mental disorders.  The most prevalent psychiatric problems were sleep (more than 50% of people with psoriasis) and sexual disorders (a depressing 71% of people with psoriasis).  They also found papers reporting an association with schizoid traits, schizophrenia, substance abuse, bipolar disorder and eating disorders.

Problems with dependency and eating may be understood as coping strategies and of course you don’t sleep or feel too sexy with all that itching and flaking going on, but the connection with bipolar disorder and schizophrenia is less easy to understand.

From closer reading, it would seem that the association with schizophrenia is mainly based on a paper which found that people with schizophrenia have a higher risk for psoriasis rather than the other way around.  It’s a bit like saying that a large number of newspapers are published online, but that doesn’t mean that a high rate of online content is newspapers.  Some of the other evidence reported in the review came from a small number case studies where psoriasis cleared up after anti-psychotics were administered.   When psychiatrists talk about schizoid personality or traits the main characteristics are social isolation, intimacy avoidance and restricted affections.  Well duh.  It’s hardly surprising to act like this when you are covered in psoriasis.

Whichever way you look at it, having psoriasis can make you feel bonkers at times.  But it doesn’t have to be that way.  I have one, unique life, albeit a life marred by flaking skin, but I want to be happy and enjoy it.  Sure, I would bite the hand off someone offering me a cure, but until that happy day comes, I want to make the most of my life in spite of my skin.  I believe I can.  There are many psychological strategies and techniques to help you cope with your skin.  You can learn these on your own with the many self help resources available online or find a good psychologist to lead the way.

Reference

Ferreira BI, Abreu JL, Reis JP, Figueiredo AM. (2016). Psoriasis and Associated Psychiatric Disorders: A Systematic Review on Etiopathogenesis and Clinical Correlation. J Clin Aesthet Dermatol;9(6):36-43.

 

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Urgh what’s that? How to cope with nosey, ignorant and plain rude people when you have psoriasis

 

Hands up if you’re too scared to show your skin, psoriasis and all.

Me too.

What is it we’re afraid of?  That people will judge us or be disgusted by our skin?  Are we afraid of attracting unwanted attention or that people will be cruel?

I’m a consultant clinical psychologist and my training in cognitive behaviour therapy (CBT) tells me that my fears are based in faulty thinking. I can challenge my thinking by telling myself most people won’t notice my psoriasis and those that do, won’t judge me.  I don’t judge people and I’m not so special, so why do I assume that everyone else is judgemental?  So I know how to do CBT and I know it can work really well.  Then why am I still scouring the shops for long sleeve dresses and wearing trousers on the hottest day of the year?  I’ll tell you.

I was 17 and it was summer.  We had planned a girl’s night out in the village pub.  I had a lovely dress I’d never worn and I braved it with bare legs despite the plaques.  No-one would notice I told myself and besides, my dress was gorgeous – that’s all anyone would see.  We got served at the bar, despite being underage, and spirits were high.  And then I heard him, ‘Oh my God.  Look at her legs.  It’s disgusting.’  I froze, drink in hand, cheeks flushed and held my breath.  Was he talking about me?  And then I felt someone poke my leg, actually physically touch a plaque of psoriasis, and the group of young men behind me broke into delighted screams and laughter.  I said nothing.  I wanted to die.  My friends moved around me protectively and glared at them, trying to change the subject.  I don’t remember saying much for the rest of the evening, barely moving, hardly breathing, wishing for a power cut so I could escape under the cover of darkness.  When I got home, I cried and cried until I was exhausted.  Thinking about it makes me shake even now, nearly thirty years later.  This experience means CBT will never work 100% for me.  And it’s not the only time someone was thoughtless or downright mean about my skin either.

So if CBT doesn’t work, what’s going to help me face the world in my swimming costume?  If I do get unwanted attention, I need to be prepared.  I need to have thought carefully how I am going to respond to questions and comments and then practice saying it in front of the mirror or with a friend so when it happens, I respond automatically rather than freeze.

A good response to the ‘Oh that looks sore’ comment is an explanation (It’s psoriasis), followed by reassurance (It looks sore but it doesn’t hurt), followed by distraction (Have you been here before?).  Distraction is a great skill and once you learn how it is easy to change the direction of a conversation your confidence will soar.  People love to talk about themselves and very soon they will have forgotten about your skin.  You can read more in earlier blog post.

For the unkind comments, you might want to have a couple of witty comebacks up your sleeve.  I wish I’d said, ‘’Does it take a lot of practice to learn to be so rude?’ in the pub all those years ago.

Someone once told me that when a complete stranger approached her to tell her how sore her psoriasis looked, she would clasp them in a warm and close embrace, thank them for their concern and say, ‘It truly is a terrible disease and horribly contagious’.  Not true of course but made her feel so much better.

Dealing with Disgust

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A paper published in the Psychological Bulletin examined the emotion disgust.   The authors suggest that disgust is an innate emotion designed to protect an individual from disease. Humans are instinctively disgusted by something that looks like it might be harmful. In the case of disease, the feeling of disgust is triggered by visible symptoms and it leads the disgusted person to keep their distance and hence avoid catching it. They suggest that feelings of disgust are more strongly aroused when the person with symptoms is a stranger.

This paper could make quite depressing reading for those of us with psoriasis and might explain the extreme reactions some psoriasis sufferers have experienced. If strangers can’t help feeling disgusted and we can’t help having psoriasis, how can we deal with it? Well, we could hide away – wear long sleeves, avoid swimming or the hairdressers, never use shop changing rooms or wear a bikini on the beach.

An alternative solution might be to learn to manage the reactions of others instead. The charity Changing Faces has great advice. They suggest using an Explain-Reassure-Distract method to deal with comments or questions. For example:

 

Explain: “I have psoriasis.”

Reassure: “It’s not catching. Don’t let it bother you.”

 Distract: “Have you been here before?” Or “Did you see the football last night?”

 

In this way, the person with psoriasis can take control of the conversation and limit its potential to cause upset.

There is an article in The Psychologist by James Partridge and Adam Pearson, two inspirational men with visible differences. They suggest that if you have a disfigurement you have to be more socially skilled to help manage the reactions of others.   Both James, who was badly burned in a car accident, and Adam, who has Type 1 neurofibromatosis, have learned to do this:

James:

I experimented with different levels of eye-contact, handshake, verbal energy and body language, and found out and eventually mastered the skills to deal with the scared-ness I met – ‘scared’ being an acronym for staring, curiosity, anguish, recoil, embarrassment and dread. These skills mediated the effect of my outside and boosted my inside too.

Adam:

I discovered too how to control a social situation – just going up to someone who is staring or acting funny and saying ‘Hi’ is a really good way of breaking the ice and showing your human side.

There is no doubt that facing the world, plaques and all, takes a great deal of courage. But, like all things, it gets easier with practise. Decide how you want to explain, reassure and distract. Choose your own words and try them out on your family or in the mirror.

If you have a child with psoriasis, practise it with them so they can use it at school. Instead of getting cross if someone asks what is wrong with your child, model an “explain, reassure, distract” response so your child can learn from watching you. Be prepared and then you won’t get upset, flustered or angry in the heat of the moment.

Stop hiding away. Take a deep breath and get out there!

 

References

Oaten, M., Stevenson, R.J. and Case, T.I. (2009). Psychological Disgust as a Disease-Avoidance Mechanism. Psychological Bulletin, Vol. 135 (2), 303–321.

Partridge, J. and Pearson, A. (2008). Don’t worry…it’s the inside that counts. The Psychologist, 21, 490-491.