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.

Psoriasis and sleep

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I’ve never really suffered with itching except for the summer after my third child was born.  I spent night after night either feeding my baby or scratching until I bled.  It was the start of a horrible vicious cycle.  The more I itched, the less I slept, the less I slept, the worse my skin was.  Psoriasis really is the disease that keeps on giving but luckily, the unbearable itchiness only lasted a few months.

Those months of sleep deprivation made me realise how important sleep is to my skin.  My psoriasis is always calmer and more manageable when my sleep is good quality.  I don’t suppose I am the only one to notice that, so here are my top tips for good quality sleep:

Reduce your caffeine intake from late afternoon onwards.  That includes tea, coffee, energy drinks and chocolate.  Ideally give up products containing caffeine altogether.  Drink chamomile tea or a milky drink at bedtime instead.  Alcohol and nicotine are also stimulants that will disturb your sleep.

Get some exercise during the day.  Something outdoors, like walking or cycling so you get some sunlight will be beneficial as natural light is linked to our sleep cycle.

Get into a good routine.  Go to bed and get up at the same time every day.  Get up at your set time, even if you’ve had a bad night.  Try not to nap during the day.  Sadly our bodies do best on monotonous, boring routine.

Don’t stress about not sleeping.  If you are lying awake in bed in the wee small hours, don’t panic about how tired you will be or how your skin will suffer.  Easier said than done I know, but instead of worrying, use the time to do some mindfulness.  That way you’ll be using the time to do your body some good even if you aren’t asleep.  Try a mindful minute or download a podcast.

Turn your clock to face the wall.  Don’t be tempted to check what time it is.  It doesn’t matter and will only stress you out or wake you up.  Don’t cheat and look at your phone or your watch.  You don’t need to know what time it is and while we’re at it, you probably don’t need your phone next to your bed either.

Ask yourself whether you need less sleep than you used to.  Our sleep requirements often reduce as we get older but we still expect to need the nine hours we had when we were teenagers.  Whatever your bedtime was 20 years ago, you can bet it is too early now.

Remember, you are probably getting more sleep than you realise.  Research in sleep laboratories show that individuals who claim not to sleep, do get some shut eye and much more than they estimate.

Make your bedroom relaxing and inviting.  My favourite of all, are clean sheets, line dried (they smell so good after a day in the sun) and preferably put on the bed by someone else.  I may not have a great night’s sleep but at least I go to bed happy.

Sweet dreams.

Be mindful while the kettle boils

One Minute of Mindfulness

As I wrote in an earlier post, mindfulness can help with psoriasis (mindfulness and psoriasis).

This is a simple mindful exercise you can do whilst waiting for the kettle to boil.kettle

Put the kettle on and then focus all your attention on your breathing. There’s no need to slow down your breathing, just leave your eyes open and breathe as you normally would. Count at the end of each out breath.

Your mind will wander, that’s normal, so be ready to notice that and bring your attention back to your breath.

Feel the sensations of each breath as it flows into and out of your body. Notice the sensations in your nose, your rib cage, your chest. Notice the temperature of the air as you breathe in and then again when you breathe out.

If your thoughts drift away don’t worry. Simply notice that it’s happened and come back to focus on your breath. In and out. In and out.

Continue this until the kettle has come to a boil.

And that’s it.

It seems a simple task but it will have a powerful effect on your body. Notice how you feel afterwards and the more you practice the easier it becomes.  Mindfulness can help with anxiety, depression and stress and may even help your skin.

You can use this exercise many times throughout the day, whenever you need a cuppa!

Mindfulness and Psoriasis

strawberries_strawberry_fruit_214340I often teach mindfulness to the people I work with. People who are struggling with painful and distressing symptoms find it a useful tool in helping them to cope.

Our brains are so complex and so busy and our thoughts can have a powerful physical affect on our bodies.  Remembering a stressful incident at work can raise your blood pressure, thinking about the presentation we have to do in a months time can cause a surge in adrenaline.  We have amazing brains.  A picture of a delicious cake or juicy strawberries can make us salivate, a photograph can physically arouse us.  But there are times when we need to quieten it down a bit.  To have a rest from our thoughts.  Mindfulness can help with that.

There are many great apps and podcasts to help you practice.  I would recommend watching anything by Mark Williams on youtube.  Try this video if you have spare hour.

I would also recommend Palouse Mindfulness  This is a fantastic resource which takes you through a six week course.  It’s free and there are no catches.  Try listening to the Body Scan exercise.

If you want to start with something simple, try a mindful minute.  You can do it whilst waiting for the kettle to boil.  Please comment below and let me know how you got on.

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.

Psoriasis. Good for your soul?

I was at a paediatric psychology network conference and listened to a very interesting presentation on positive personal growth following trauma or illness (Green 2009) and I wondered if this linked to psoriasis in any way.

This presentation highlighted the surprising evidence that many people do well after ill health or having something traumatic happen to them. In some cases, they do even better than those who have not had a similar traumatic experience.

The speaker gave lots of evidence. Of a group of adults who had been abused as children, 45% were classified as resilient and had no psychological problems. When compared to a group of adults who had not been abused they were actually functioning better. The same story was seen in a large sub group of children and adults who were involved in the ferry disasters, Herald of Free Enterprise and The Jupiter, in the 1990s. The same pattern is seen in survivors of cancer and heart attacks, women with impaired fertility and even in those who have lost a child.

So what does this mean? I don’t think the evidence suggests that people ‘benefit’ from these awful events. They are affected and no doubt those who have lost loved ones or even aspects of their own functioning still grieve, but these events and illnesses have helped them to reflect and perhaps value the good things in life. We heard a very moving quote from a father who had lost two daughters in the Hillsborough disaster “It sounds ridiculous, I know, but I think I have come out of it a better person. But I’ll always be a chipped cup…..” (Times Online)

So how does this relate to psoriasis? Can we find anything good from this condition? I did struggle with this at first being so focussed on the negatives (flaking, itching, soreness, embarrassment). But thinking away from the immediate symptoms I do think of myself as a caring person, I don’t judge a book by its cover and I am empathic. Would I have chosen to be a clinical psychologist had I grown up blemish free? I don’t know the answer to that. I would quite happily give my psoriasis away (any takers? No?) but it has taught me to cope with life’s challenges and it has taught me not to worry about the small things. A bad hair day would not have me diving under the duvet like many people I know. It has made me think about the connection between alcohol and psoriasis in a new light too. Perhaps we are not drinking to forget, maybe we are just enthusiastic party animals!

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.

Searching For A Cure For Psoriasis

I’ve been thinking about how the search for a cure affects our well being. In my twenties I found an ‘alternative’ treatment called Skin Cap. The online community was reporting great success and it contained nothing more harmful than zinc. I bought a few cans and was delighted. It was a spray, easy to use and cleared my skin in record time. I bought several more cans and sprayed away with joy. However it did all seem too good to be true. I was noticing side effects like thinning of my skin and bruising so I wasn’t surprised when it emerged that it contained an unlisted steroid. I stopped using it and had the worse rebound ever. But even worse than the flare in my symptoms was the horrible feeling of being let down and having my hopes dashed. Not surprisingly I became quite low and depressed. I thought I had found the answer to my psoriasis and had been ‘in control’ for the best part of a year. I felt cheated and let down and determined not to fall for a ‘miracle cure’ again.

I have had psoriasis for over twenty years and in that time have tried many ‘cures’. The disappointment I have felt when they fail always affects me deeply and more so than the waste of the money or time. In more recent years I have come to the decision that I won’t invest any hope, time or effort in a ‘miracle cure’ that costs money. I am prepared to try treatments that involve healthy lifestyles like cutting out wheat and processed food and taking vitamins, as I believe that it will probably do me some good even if it doesn’t clear the psoriasis. This is my personal decision but is it the best approach to take? What does the research suggest I should be doing? Should I accept my psoriasis or should I keep trying new potions and searching for a cure?

With this in mind I searched healthcare databases (Medline and PsychInfo) for research looking at acceptance and coping. I found one relevant paper by Zalewska et al (2007) that suggested factors such as higher levels of optimism and a lower conviction of others’ influence on one’s health were linked with acceptance. The authors also stated that a lack of acceptance is associated with poorer medical adherence and delayed clinical improvement. In other words, if I accept my skin as it is, I am more likely to follow doctor’s orders and get better, and I am more likely to accept it if I feel optimistic and don’t think that my health is dependent on someone else.

Whilst not specifically answering my question, this research would suggest that I should be optimistic that something will work (keep trying) and I should have belief in my own ability to cure it (don’t rely on someone else to find the cure for me). Whether or not I should invest any hope or money in a cure remains unanswered. If you know of any research that addresses this question I would be very interested to hear more.

References

Zalewska A,Miniszewska J,Chodkiewicz J,Narbutt J (2007). Acceptance of chronic illness in psoriasis. Journal of the European Academy of Dermatology & Venereology, vol./is. 21/2(235-42), 0926-9959