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.

CBT and Psoriasis

Cognitive Behavioural Therapy (CBT) is a commonly used psychological approach to treating a wide variety of conditions such as depression, anxiety, phobias and more recently has been used in physical health conditions. The basic idea behind this therapy is that the way we think affects how we feel and our behaviour (what we do or don’t do).

For example:

Situation A

It’s the second week of July and so far it has been a great summer. Up until this point Rebecca has been wearing long sleeves and trousers to hide her psoriasis but today she can take the heat no longer and has decided to wear a skirt and t-shirt to her friend’s house. She catches a bus there and on the way a group of school children behind her start laughing. Rebecca thinks, “Those kids are laughing at my skin. It looks so awful. They must think I’m disgusting. I shouldn’t have worn a skirt and short sleeves.” She blushes and feels hot and embarrassed. She jumps off at the next stop, walks home in tears and changes into trousers.

 

Situation B

It’s the second week of July and so far it has been a great summer. Up until this point Rebecca has been wearing long sleeves and trousers to hide her psoriasis but today she can take the heat no longer and has decided to wear a skirt and t-shirt to her friend’s house. She catches a bus there and on the way a group of school children behind her start laughing. Rebecca thinks, “Teenagers seem to find everything so funny. I wonder what they are laughing about. I bet they are talking about boys. I can remember being like that.” Rebecca starts to daydream and remember happy times from her youth. She arrives at her friend’s house feeling happy.

 

Situation C

It’s the second week of July and so far it has been a great summer. Up until this point Rebecca has been wearing long sleeves and trousers to hide her psoriasis but today she can take the heat no longer and has decided to wear a skirt and t-shirt to her friend’s house. She catches a bus there and on the way a group of school children behind her start laughing. Rebecca thinks, “I wonder if they are laughing at me. I doubt it. They wouldn’t even see my legs from the back of the bus and anyway I don’t suppose psoriasis is that funny.” She turns on her MP3 player, reads her book for the rest of the journey forgetting all about the girls at the back. She arrives at her friend’s house feeling relaxed.

It’s the same situation but because the thoughts are different, the feelings and behaviour are different too. Who knows what the teenagers were laughing at? They might have found the sight of Rebecca’s arms and legs hilarious. They might not have.

Which one of those examples would have been most like you? If it is A, then is there anything you can do about it? CBT could be the solution.

We all think all the time. It’s often boring stuff, thinking about what to cook for dinner or who said what to whom at the office. One thought leads to another and to another. Suddenly you find yourself thinking about someone you met on holiday ten years ago and you don’t know what led you there. There would have been a chain of thoughts that led to this one but it’s often hard to back-track as we don’t plan the thoughts. They just pop up, unbidden, automatically, one after another. The first step in CBT is learning to identify these automatic thoughts, spot the unhelpful ones and challenge them. Rebecca in situation A didn’t stop to question her thoughts. She believed her thoughts as if they were the truth. If she had been able to stop her thoughts and challenge them with something like this – “hang on a minute am I jumping to conclusions, could they be laughing at something else?” then she might have been able to carry on with her journey without feeling so ashamed and bad about herself.

This is a very brief outline of CBT but it seems to me to make sense that this kind of an approach would be helpful to people with psoriasis. Some hospitals have started to use CBT with people with psoriasis and a few research papers have been published. You can read more about this in a future post.