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.

So you’ve got psoriasis? Cheer up love, it could be worse

imageYou know logically there are far worse things to have than psoriasis.  A glance at the evening news will tell you there are hideous things happening to millions of people across the world at every moment.  But someone telling you that having psoriasis is not so bad by comparison does not make you want to put on your dancing shoes and throw a celebratory party.  It makes you want to throttle them. And then put on your dancing shoes to kick them when they’re down on the floor.

I’m not going to tell you to cheer up.  I’ve had psoriasis for over 30 years.  I know all about the soreness, the flaking, the pain, the embarrassment, (pause for breath), the restrictions to life, the unpleasant treatments, the uncertainty and the horrible out of control feeling it brings but I honestly believe you can be happy despite having this condition.  It’s just not as simple as someone telling you to look on the bright side because it could be worse.

There’s an exciting and developing field of psychology devoted to helping people feel positive and happy whatever their circumstances.  If you think of a scale with misery at one end and ecstasy on the other, traditionally a psychologist would aim to help someone move from the depression end to somewhere in the middle of the scale; a neutral point.  Recently psychologists have begun to focus on helping people move towards the happiness end of the scale instead of just aiming for an absence of low mood.

Positive psychology therapy involves techniques such as learning to savour the moment and connecting with other people and there is good scientific evidence that these strategies can help with clinical depression.  You can read more about these simple yet powerful techniques on the Action for Happiness website.

It would seem that being happy has more benefits than the simple joy it brings.  In the 1930s, a large group of Catholic nuns were required to write a 2-3 page autobiography before entering the convent and then went on to live very similarly structured lives.  Many years later psychologists discovered and analysed these autobiographies rating the nuns’ cheerfulness.  They discovered that the positive nuns lived longer by 10 years.  A whopping 54% of cheerful nuns reached the age of 94 years compared with only 15% of the least cheerful ones.  Evidence that it’s not only nice to be happy, it’s good for you too.

Living with psoriasis is not easy.  Often it feels like I’ve turned up to an elegant cocktail party in fancy dress by mistake.  Everyone else looks like they belong to the Kardashian clan and I’ve come as Hellboy.  Oh the shame of being the only guest to miss the ‘bring your flawless skin’ memo.

So yes, it could be worse and yes, it could be better.  The long and the short of it is I have psoriasis and there’s no cure.  I struggle with accepting that but I am determined to enjoy my life in spite of it.  I want to be happy.  I am more than skin.

Follow my blog for tips about coping with psoriasis.

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.

 

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!

Depression and psoriasis

Many of us with psoriasis feel down about our skin. The research evidence looking at the link between depression and psoriasis is itself quite gloomy. One recent study conducted in Italy found that over 60% of people with psoriasis have symptoms of clinical depression (Eposito, 2006). Compare that to approximately 10% of people in the general population.

But how do you know if the way you are feeling is clinical depression? We all get low from time to time but feeling low is considered to be clinical depression when five or more symptoms from the following list have been present over a two week period, and at least one of the symptoms is either (1) depressed mood or (2) loss of interest or pleasure*:

  • Depressed mood most of the day, nearly every day;
  • Markedly diminished interest or pleasure in all, or almost all, activities most of the day, nearly every day;
  • Significant weight loss when not dieting or weight gain (e.g., a change of more than 5 of body weight in a month), or decrease or increase in appetite nearly every day;
  • Insomnia or hypersomnia nearly every day;
  • Psychomotor agitation or retardation nearly every day;
  • Fatigue or loss of energy nearly every day;
  • Feelings of worthlessness or excessive or inappropriate guilt nearly every day;
  • Diminished ability to think or concentrate, or indecisiveness, nearly every day;
  • Recurrent thoughts of death (not just fear of dying), recurrent suicidal ideation without a specific plan, or a suicide attempt or a specific plan for committing suicide.

Feeling depressed about psoriasis is tricky because as we all know there is no cure for psoriasis. If someone could wave a magic wand and rid you of this disease then this is likely to be an effective cure for your low mood. Sadly there is no magic wand (or cream or tablet) to cure your skin so what can you do instead?

The symptoms of depression can be treated using anti-depressant medication and/or a psychological therapy. However a treatment that only aimed to improve the symptoms of depression would miss the bigger picture. It would be hard to treat depression without tackling the root cause: psoriasis. It is a Catch 22 situation because we know that treating psoriasis is not so easy. Perhaps equally important is to learn to cope with psoriasis so that it has less of an impact on your mood. If you can’t get rid of it then you need to learn how to live with it. How well you cope with this condition can determine how happy and fulfilled your life is. Learning to identify negative or unhelpful thoughts, changing behaviour and relaxation may be the tools to coping. Look out for tips relating to these strategies in future posts.

If you have read the list of symptoms above and think that you are depressed then please visit your GP to discuss treatment options.

* Taken from the DSM IV – The Diagnostic and Statistical Manual of Mental Disorders- Fourth Edition (American Psychiatric Association, 1994) – the current reference used by mental health professionals and physicians to diagnose mental disorders.

Reference

Esposito M, Saraceno R, Giunta A, Maccarone M, Chimenti S:An Italian Study on Psoriasis and Depression.Dermatology 2006;212:123-127