Psoriasis and Sleep

People with psoriasis often suffer with sleep problems.  A recent study in the British Journal of Dermatology found that 25% of people with psoriasis suffered with clinical insomnia and more than half were poor sleepers.

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Poor sleep can have a negative impact on your skin, overall health and well-being.  There are things you can do to improve the situation and many apps, books and websites which can also help.  Try the resources listed below:

Books:

Apps:

Websites:

Remember to moisturise before bed to reduce any itching.

Good luck and sweet dreams.

 

 

Psoriasis and Shame

I had my hair cut today.  If like me you have psoriasis on your scalp, you’ll understand the stress associated with such an everyday activity.

I can’t face sitting in a busy salon with a dark towel over my shoulders.  No matter how good the haircut, the embarrassment would be too much.  Luckily, I have a kind and understanding hairdresser who cuts my hair in the back room of her house; but even then I cringe at the flakes that flurry onto my shoulders and the floor.  I couldn’t bear to have strangers witness that as well.  John Updike, the American author, captured the feeling of shame he also felt about his psoriasis:

Nov. 1. The doctor whistles when I take off my clothes.  “Quite a case.”…….As I drag my clothes on, a shower of silver falls to the floor.  He calls it, professionally, “scale”.  I call it, inwardly, filth.

Vladimir Nabokov, another writer with psoriasis, also described his feelings of shame and humiliation “about my bloody underwear, blotchy mug and the scales pouring down on the carpet”.

I’m not alone in feeling ashamed.  A study of over 900 people with psoriasis found that shame was one of the most common emotions experienced (Sampogna et al, 2012).  Shame had a serious impact on the lives of people in this study; higher levels were associated with a lower level of educational attainment and difficulties in daily activities.  Participants didn’t seem to get used to having psoriasis: the longer they’d had it, the more shame they reported.

It’s shame that makes us conceal our skin and avoid certain situations. Shame stops us going swimming, wearing t-shirts on hot days, and relaxing whilst getting our hair cut. It’s shame that stops us pursuing our goals and fulfilling our potential.  Shame can even drive us to self-medicate with alcohol, drugs and food.

Our feelings of shame can also affect our physical health.  Feelings of shame cause our bodies to release various stress hormones including cortisol and pro-inflammatory cytokines (Dolezal and Lyons, 2017).  Over a long time, this physiological consequence of  shame will cause wear and tear on the body and increase the likelihood of various health conditions such as weight gain, heart disease and hardening of the arteries.

So what can you do about it?
  • Your shame is not helping you.  Acknowledge your feelings, they’re a normal human reaction to having psoriasis.   Regard yourself with kindness, forgiveness and compassion.
  • Get support from your family and friends.  One recent case study reported how family therapy for a 46 year old woman with psoriasis not only helped her manage  feelings of shame but also cleared her skin (Shah and Bewley, 2014).
  • Notice your critical and judgmental voice – is it telling you how disgusting you are?  It’s not helping you and you wouldn’t use it on a loved one or a friend with psoriasis, so why turn it on yourself?
  • Remind yourself you have an autoimmune disease and it’s not your fault.
  • Remember most people are too concerned with their own faults to be judging you.
  • Perfection is a myth anyway.

We are psoriasis warriors – we shouldn’t feel ashamed – we are amazing!

Please share this if you enjoyed it.

 

References:

  1. Updike, J. (1976). From the Journal of a Leper. The New Yorker, July 19, 1976 P. 28.
  2. Nabokov, V. (2017).  Letters to Vera (edited and translated by B. Boyd and O. Veronica). New York: Alfred A. Knopf.
  3. Sampogna, F., Tabouli, T., Abeni, D. et al (2012). Living with Psoriasis:Prevalence of Shame, Anger, Worry and Problems in Daily Activities and Social Life. Acts Derm Venereol; 92: 299-303.
  4. Dolezal and Lyons, (2017).  Health-related shame: an affective determinant of health?. B. Med Humanit; 43: 257-263.
  5. Shah A. and Bewley A. (2014).  Psoriasis: ‘the badge of shame’.  A case report of a psychological intervention to reduce and potentially clear chronic skin disease.  Clinical and Experimental Dermatology; 39 (5): 600-603.

How to support your child with psoriasis

A significant proportion of people with psoriasis first develop it in childhood.  As a parent it’s incredibly hard to watch your child struggle and you can be left feeling quite helpless.  Here are my top tips for supporting your child:

Listen

Your instinct will be to try and fix things.  But you can’t.  Listening is the most important thing you can do.  Your child needs you to hear how tough things are.  Reflect back what you heard so they know you understood:  “It sounds like things were pretty tough today”.  If you don’t know what I mean then watch this short animation about empathy.

Prepare them

People will ask questions, point, stare, grimace.  Unless you plan to keep your child at home or covered up for the rest of their lives then get them prepared to deal with unwanted attention.  Teach them the Explain-Reassure-Distract method and practice, practice, practice.

Help them get control

Encourage them to speak in clinic appointments and take responsibility for their own treatments.  Try not to nag and remember to give lots of praise if they do their treatments by themselves.  For younger children consider using a reward chart.

Build their confidence

Tell them they’re wonderful and all the reasons why.  Are they funny, kind, clever or creative?  Your child is much more than skin so remind them of that.

Don’t force them to uncover

Don’t make them show their skin if they don’t feel ready.  It might not look awful to you but it takes a lot of courage to show skin covered in psoriasis to the world.  If they’re not ready it will just be horrible.  So what if they want to wear trousers instead of shorts?  Join them!

Inspire them

Watch movies with inspiring characters.  Read books where the main character has imperfections or even psoriasis.

Get support for yourself

There’s nothing more painful than seeing your child suffer and having no control.  Seek support for yourself; try mindfulness, reach out to friends or join a forum.

Could childhood stress cause psoriasis?

Did you know that stressful experiences in your childhood may have increased your chances of developing psoriasis?

Known as ACEs, Adverse Childhood Experiences are anything but ace. They include physical, emotional and sexual abuse, witnessing domestic violence or growing up with household substance abuse.

It was always clear that such traumas could affect people as adults but now researchers across the globe are discovering that they have an even more powerful impact on your health as an adult.

Having a history of ACEs increases your risks of health-harming behaviours such as smoking, drinking or eating too much of the wrong stuff but what’s even more fascinating is that these experiences have an effect on the way the brain develops in childhood.

People who have a certain level of ACEs experience changes in their neurological, immunological and hormonal development. There seems to be something about being in threat mode frequently during childhood that wires the brain to be prepared for danger increasing tissue inflammation and resulting in long-term changes in immune response.  This leads to tissue damage and long-term wear and tear on the body.

There is convincing evidence that people who experience ACEs are at much higher risk for many long term health conditions like auto-immune disorders like psoriasis, cancer, lung disease, heart disease and mental health illness even when you’ve controlled for differences in lifestyle choices.  They can even shorten your life by 20 years and the more ACEs you have the higher your risk.

In one long term study (Danese et al, 2007), childhood abuse was associated with elevated CRP levels, white blood cell counts, and other markers of inflammation 20 years later.

But can we do anything about it?
Years of research have made the link indisputable but the next big challenge is what to do about it. Obviously prevention and early intervention is key but what about those people in adulthood whose traumas are in the past?

I have psoriasis and a fairly significant ACE score. Do I need to just accept that this is the way I developed or can I reverse things?  The research is still in it’s infancy.  We know we can help people cope with trauma but what we don’t know is whether that reverse the neurological and immunological changes?

Helping adults heal is the next big challenge.  The brain has plasticity and can change at any age, so perhaps meditation and mindfulness practice can help to improve things.

It’s also important to remember that whilst a higher score means your risk is higher, it doesn’t determine your future.  Many factors such as a loving parent, grandparent or supportive school teacher can promote resilience so that lots of people with high scores do very well indeed.

One final thing to think about: I developed psoriasis when I was 13 years. I did have adverse childhood experiences to contend with – but psoriasis was another enormous ACE to add to my load and now I wonder for me whether it all became a bit of a vicious circle.

If you want to know more, then watch this excellent TED talk: Nadine Burke Harris TED talk

or watch this informative short animation: ACEs // Public Health Network in Wales

You can score your own ACEs here: Take the ACE quiz

Reference

Danese A. et al (2007). Childhood maltreatment predicts adult inflammation in a life-course study. Proc Natl Acad Sci U S A; 104(4):1319-24.

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’s 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.

 

Thumb to finger relaxation

IMG_1472The ability to relax can be very helpful, especially when you have a chronic illness like psoriasis.  If you suffer with pain then learning to relax is even more important.  Pain leads to tension which can lead to more pain, more tension on and on in a vicious cycle.Slide1

Relaxation can help with the tension and stop pain from getting worse.  It’s a skill like any other and requires lots of practice.  It’s important to practice at times when you aren’t tense as well as using it as a strategy to cope at more difficult times.  The more you do it, the more effective it will be.

There are many different ways to relax.

This is one method I love.  You can use it when you are tense or irritable, when your pain is getting worse and before bed to help you get a good night’s sleep.

Thumb to Finger Relaxation

Get comfy and remove distractions like the television and your mobile.

Touch your thumb to your index/pointer finger.  Keep it there and think about a time when you felt physically tired in a healthy way, for example after exercise or a strenuous activity.  Imagine you have just swum several lengths or jogged some distance.  Spend a minute or so remembering that feeling of ‘healthy fatigue’.

Touch your thumb to your middle finger and as you do, remember a time when you felt loved and loving.  It could be a warm hug or embrace or a touching conversation.  Spend a couple of minutes remembering that feeling.

Touch your thumb to your ring finger and as you do remember the nicest compliment anyone paid you. What did they say?  Try to accept that compliment now.  Truly believe it and pay the person who gave it to you the respect of accepting it whole-heartedly.  Remember that feeling for a minute or so.

Touch your thumb to your little finger and as you do remember the most beautiful place you’ve ever been.  Visualise it in your mind.  Remember the scent and noise, the ambiance and the temperature.  Enjoy this image for a minute or two.

That’s it.

You can do this exercise anywhere and it only takes around 10 minutes.

If you enjoyed that, why not try a mindful minute.

Please comment below or share if you found this useful.

With thanks to my beautiful hand model in the photograph.

The Shame of Psoriasis

What are people thinking about you when they look at you?

OMG how ugly
She looks dirty
That’s disgusting
I don’t want to go anywhere near him in case I catch it

It’s tough to live with those thoughts going around your head and little wonder we try to hide our skin and cover up.

People with psoriasis often rate other people’s reactions to their skin as the main difficulty with the condition.

But are you sure you’re always right about what people are thinking?

A psychology experiment carried out in 1980 took a group of women and made them up with fake scars. The women, who thought they were ‘disfigured’, then had a conversation with a stranger who knew nothing about the experiment. After the conversation, the disfigured women felt stigmatised. They were more aware of the stranger’s behaviours like staring and related this to their appearance. They thought the stranger was reacting negatively to the scar and this affected how favourably they rated the stranger. What women didn’t know was the experimenters had actually removed the scar before the conversation took place so any negative reaction to the (non-existent) scar was imagined. This study tells us that believing you look different heightens your awareness of other people’s behaviour and you are more likely to interpretate their behaviour as negatively related to your appearance – whether or not that is actually the case. Because of this, you are less likely to warm to strangers.

There’s no doubt some people are rude, unpleasant and insensitive. I’ve met a fair few of them. I’ve written about one particularly upsetting encounter here. But perhaps it’s not quite as bad as you think. Try some CBT and see if there is a different way of thinking?

 

Reference

Kleck RE and Strenta A (1980). Perceptions of the impact of negatively valued physical characteristics on social interaction. Journal of Personality and Social Psychology, 39 (5), 861-873.

Sun, Sand, Sea and Psoriasis

image

It’s beach weather and that can be very stressful for people with psoriasis. Whilst most people are thinking about sand castles and seashells, we are thinking about skin, skin, skin.

Our options for the beach are:
* Stay away
* Go but cover up
* Brave it in beach attire

Neither option is the right one and I have done all three at various times in my life. Here are my beach tips whether you decide to cover up or strip off.

1. Pick the right swimsuit. In my time I have worn long surf shorts with a tankini top and I also own a stylish modestkini (yes that is a thing!). I wear a wetsuit to swim in the sea which is quite sensible on the Welsh coast even when your skin is perfectly perfect.

2. Wear sunscreen. Whilst the UVB rays can be helpful, burning never is.

3. Try waterproof camouflage make-up. I spent a wonderful afternoon with a Red Cross camouflage make-up consultant and I came away with a prescription for my exact skin colour. The service is now provided by Changing Faces. I urge you to book yourself in and see what a good concealer can do.

4. Use a few windbreaks. It will give you privacy, as well as keep the sea breeze from chilling you.

5. Let your children/partner/beach buddy bury your legs in the sand. Cover your plaques, exfoliate and keep them entertained at the same time.

6. Be prepared for comments and questions so it doesn’t ruin your day if someone asks about your skin. Read this for more advice about dealing with unwanted attention.  This blog post might help too.

7.  Identify your thoughts that are making you feel anxious.  Try some CBT techniques to challenge them.

Enjoy!

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!