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.

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.

Psoriasis and Stress

It’s usually taken as read that stress makes psoriasis worse but in actual fact there is very little research evidence to suggest that this is the case. To date no-one has been able to track stressful life events in a large enough group of people with psoriasis to see whether an increase in their symptoms followed on from an increase in stress. A recent study by Berg et al (2008) used daily diaries to try and link stress to psoriasis flare-ups. They found no pattern between the two factors.

The strongest form of evidence is found in research studies that have asked people whether they think stress makes their skin worse. And although most people tend to say yes, what’s not clear is how accurate a judgement people can truly make. For a start most people are quite likely to have been told by their GP or dermatologist that stress makes psoriasis worse, and this is most definitely going to influence any reply. On top of that, like the straw that broke the poor camel’s back, people may be more bothered by their skin when under stress. Their psoriasis may be the same all the year but it’s only when work is going badly and the kids have all got winter vomiting virus and the in-laws have arrived for three weeks over Christmas that they begin to notice and be bothered by their skin more than usual.

An additional problem is that people who are finding life stressful may not lead the healthiest of lifestyles. They might not find the time to apply their creams properly, might drink the odd glass (or bottle) of wine, eat take-away food for ten days in a row and may be getting less sleep. All of which may result in a flare of symptoms.

Believing that stress is responsible for your psoriasis may not be that helpful either. I found in a research study that the people who believed stress was a causal factor in their psoriasis were more likely to be anxious, depressed and stressed out than those who didn’t believe that stress was related, despite no differences in the level of psoriasis. In other health conditions researchers have found that if people believe stress is causing the problem then they feel less in control and this low self-efficacy results in low mood.

What we do know for sure is that having psoriasis is stressful and therein lies an additional compounding problem. If your psoriasis is bad you will probably feel stressed: but which came first? It’s a classic chicken and egg situation.

So there is no firm medical evidence to suggest that stress causes psoriasis, but given that psoriasis causes stress and stress in itself is bad for you, it might be wise to take measures to relax and de-stress.

Some people find this easier than others but for most of us relaxation is a skill that has to be learned and practised. Good relaxation is not about getting an extra hour in bed on a Sunday morning or spending a fortune on designer shoes.   Instead it’s about learning to become aware of your body; your muscle tension, your breathing and your thoughts, and learning to reverse the signs of stress and tension. A bit of stress is not bad for us. It helps us to perform and get though difficult situations. It’s when it becomes prolonged that it becomes a problem. The key is to practice relaxation regularly and at times when you are not stressed or tense. Then when you do come under fire those skills should come in to play like second nature. Watch out for tips on how to relax in future posts.

References

Berg M; Svensson M; Brandberg M; Nordlind K (2008) Psoriasis and stress: a prospective study. Journal of the European Academy of Dermatology and Venereology : JEADV ;22(6):670-4.

O’Leary, C.J., Higgins, E. and Creamer, D., Weinman, J., (2004). Perceived Stress, Stress Attributions and Psychological Distress in Psoriasis. Journal of Psychosomatic Research 57(5):465-71.