Hot on the heels of World Psoriasis Day is Psoriasis Awareness Week for those of you for whom a mere 24 hours mulling over the ramifications of dermatological issues is simply child’s play.
Every year at this time the See Psoriasis, Look Deeper campaign looks to highlight a particular aspect of the condition.This year we are trying to spread the word about psoriasis-related arthritis which a lot of people are affected by without them necessarily realising it. If you are a psoriasis patient who has an ache or a pain it could well be related to your condition and there is a lot of help and support out there to enable you to combat it.
Please have a lookhere for a page which has a couple of videos (one with me stuttering my way through it, the other with the far more qualified Dr Sandy McBride who regular readers of this blog will know has had a massively beneficial impact on my understanding of my condition). There is also an animation which is full of useful pointers.
Please pass this information on to anyone you know who might find it useful.
It was World Psoriasis Day on Thursday 29th October. I was supposed to be in London helping my dear friend Peter to move house. The least I could do after he gave me sanctuary for a very long time. At the last minute, however, I was asked if I could wend my way back to Manchester in order to feast with the dawn chorus and appear on BBC Breakfast to give the patient’s perspective on the condition. Dr Christine Bundy with whom I sit on the See Psoriasis, Look Deeper campaign was there to say all the clever stuff, thankfully. She is a senior lecturer on Behavioural Medicine at the University of Manchester (and, as it happens, was on Any Answers this week too, as I discovered when I listened to the podcast a couple of days later) .
I do look a little tired (and bloated) from over-indulging on white bread and white wine in Germany the previous weekend but hopefully I provide some reasonable insight. Our chat is preceded by a very interesting and candid film which I also include in the video below:
Thanks to Dom Robinson for recording the piece and to Peter Crocker for forgiving my last minute withdrawal of labour (another thing to go on a very long list).
The mental health side effects of psoriasis can be quite profound, but treatment is there if you want it. Talk to your GP about it. The post below is extremely anecdotal and subjective because psoriasis treatment is so bespoke. I share it not because I am drawn to the idea of bearing some of my inner frailties because actually the opposite is true. In fact, it scares me a bit – part of me wants to post this but not Tweet about it because then no-one would come here and read it. But that would be to miss the point rather, wouldn’t it? So here you go, have a butcher’s at this. There is more about these issues at the See Psoriasis: Look Deeper website. There is much useful information there.
I have been discharged!
I have been seeing the derma-psychologist Dr Mizara for over four years. I was introduced to her when I was hospitalised with a painful and widespread outbreak of psoriasis after a throat infection. I was on immunosuppressants at the time so instead of a standard flare up I was knocked for six: psoriasis was Chris Gayle and my emotional and physical make up were the hapless and ill-equipped Zimbabwean World Cup cricket XI. Physically I was in a parlous state but mentally I was smacked straight out of the ground. Prior to that I had been doing so well: the medication had meant I’d been bump and crack and flake free for the first time since I was about 20. No pain, no ointments – my surface was flat and my sheets were clean.
(Alright – I’ll stop the cricket analogy now in case you decide to stick your bat into my crease).
I have always been rather dubious of psychoanalysis – not because I judged those who underwent it: whatever helps you, of course. Actually, I am lying. I did judge people. I judge people who share their medical and emotional woes on the internet too. I know! What a hypocrite. I don’t want to be one of those comfortable, middle class people who nods earnestly and bangs on about my councillor helping me through the latest hardships undergone by a relatively healthy white man with a home, a loving family and every episode of Doctor Who on DVD. Pass the bloody tissues.
And you know, I don’t have mental problems. Everybody who knows me would say that I’m a fairly jolly chap – yes, I get grumpy about ridiculous little things but only on stage or in dressing rooms and to hilarious (and sometimes “quite funny – three stars”) effect.
So it was with some trepidation that I went to see Dr Mizara. I’d never been very good in drama classes at that “opening up” stuff. You know, when we have to tap into our emotions and cry about something that happened to us. I’ve cried on stage, sure, found it easy, but crucially, because I was pretending to be someone else. I’m not one for bearing my soul in public (well, unless it is hidden behind the conceit of stand-up comedy – and perhaps we don’t need to get too complicated to work out the implications of that).
The first time I went we just talked – she was assessing me as I was getting acclimatised to the process. I was trying it out though – for it’d been suggested to me that it would help by a consultant whom I respect and I would give anything a go to control this scaly beast. If Dr McBride had told me to daub myself in marmalade and sing the Sailor’s Hornpipe on the roof of St Paul’s Cathedral every third Wednesday of the month I’d have had a crack. I have, in the past, spent a year taking Chinese medicine which is only marginally less ridiculous.
It’s difficult to describe Dr Mizara – considered without being distant, empathic without being touchy-feely, pragmatic without being cold.I guess the thing is, you don’t get to know your psychoanalyst : they’re doing a job, part of which is to know you. I decided early on that there’s no point in lying – a Doctor can’t fix you if you don’t tell them all of the symptoms. So of course when she asks that question “Anything else?” all those little niggles – things that have annoyed you, things that you feel guilty about, things that you don’t understand … come flying out. Total disclosure, even if it seems like it’s something irrelevant (which of course it isn’t).
That process alone has been extremely helpful. It’s a pattern of behaviour common in psoriasis patients – to bottle things up, to feel guilty about being angry about certain things because in the greater scheme they are minor. This is tied into the condition. It’s not life threatening nor is it cancer so we feel a bit burdensome complaining. The psychology of this condition is complex and it manifests itself into all other areas of our lives whether we realise it or not.
I’m my own harshest criticso it was always easy to deliver a litany of Things I’d Done wrong whenever I crossed the threshold of her small office on the first floor of the Royal Free Hospital in Hampstead. And I invariably went out feeling clearer about things : better. On some occasions I simply unburdened myself – on others I had an insight into why I had felt certain things at certain times or why I had reacted to others (and they to me) in certain ways. I cried. I got angry. But largely I tried to work out how to get less upset by this thing, or how to respond better to that one. This may sound daft to you – maybe you don’t spend hours going over conversations you had the night before, trying to spot the moments where you’d given the nice person you were talking to a reason to hate you (they didn’t give any sign they’d hated you, of course, but they still might have done). Maybe you don’t still get really upset about that stranger who said something cruel and thoughtless about the dry patches of skin on your face in 1996. Maybe you think doing that is a colossal waste of time and energy and a very silly thing to do. And you’re right: good on you and carry on not doing it. That’s probably why you’ve never been sent to a psychologist and I have.
I had a terrible year in 2013 – you don’t need to know the exact reasons why. There’s a difference between sharing one’s experiences and doing a humiliating dance dressed only in your dirty laundry. Just take it from me, it was terrible. Worse than the ending of “Lost”. I was a burden then, I know: to friends, to family. And I was in a parlous state. I went to see Dr McBride after one horrible day and she called Dr Mizara immediately and I was given a last minute session with her (she kindly flexed her schedule to accommodate me). When you are at your lowest ebb you expect friends to tell you that you are worth something but you don’t really believe it. When a medical professional tells you this and gives you coping strategies and insights it enables you to take bigger and bolder steps when all you feel like doing is curling up into a ball or drinking all the whisky in England (which I’m aware is probably not the best stuff but weepers aren’t inclined to be choosers). I am indebted to some very good friends for getting me through this period: but without the commendable empathy of those practitioners at the Royal Free I think I would have leant on my long-suffering chums to an even greater and more tedious extent than I did (so Peter, Caimh, Shauno, Dig, Susie, Mum and the rest, I think Dr Mizara and the dermatology team should be top of your list of People You Owe A Drink To For Saving You From Even More Nights Of Repetition And Tears With A Lachrymose Doctor Who Fan).
I have been seeing Dr Mizara less frequently recently.So much in my life has changed. I think when someone works so hard with you there is almost a childlike, puppy dog need to tell them what you have achieved – and in doing so you see how far you have come. “I’ve been going to the gym”, “I haven’t had a drink”, “I’ve written a play!” I’d pant, dropping each metaphorical ball at her feet and waiting to be told I was a good boy. I mean, just as needy but so much better than “Why does nobody love me?”.
Last Thursday’s appointment was a formality – just to see how I was doing. I hadn’t been in for a while. To coin the correct phrase, I have coping strategies in place, for many of those things that used to (and still do) give me grief. I have made progress. Life will still never be easy (it isn’t for anybody), but so long as I can continue to not fixate on the past, to look at things from other people’s perspective and realise that not everything they do is about me, to take less destructive paths, and essentially just chill the fuck out (OK, that last one is mine, but it’s pretty much the gist of it) then maybe I can make this journey tough life – the only one we get folks – a bit less of a perilous ride. It would be ridiculous to go to my grave having spent far more of my time worrying about the bad things that might happen (another psoriasis patient meme) than enjoying the good ones that do.
When she told me that I didn’t need to come back I was a little scared but the biggest emotion I felt was one of massive gratitude. I know it’s her job but what a profession to choose. It’s the equivalent of seeking out that maudlin git in the corner of the pub who keeps whining about the bad things that keep happening to them when it’s clear to you that they just need to stop doing what they are currently doing and then maybe they’d be alright. But I needed help that I never would have asked for and I got it. And when she said goodbye I felt tears leaping from my eyes, and I wasn’t even on stage. Nor was I being someone else.
I was being Toby and, crucially, I actually didn’t mind.
There are patient testimonies about seeing Dr Mizara for a number of skin conditions here.
Dr Mizara talks to the Telegraph about the relationship between the mind and the skin here.
There’s been quite a build up to the Manchester Psoriasis Shout Out, which is a refreshingly upbeat campaign to get people talking about this most hidden of conditions. For the first time in my life, despite my long association with the city, I set foot inside Manchester town hall on Monday 28th April. I made sure that my larynx was in good shape for this was to be the day that the shout out began.
Earlier there had been a couple of flashmob dances but I absented myself from those of the grounds of an old war wound and the fact that there’s a line (one I won’t be crossing, even with a jig). My contribution to the day (purely verbal, thankfully) came during the Manchester launch of the See Psoriasis, Look Deeper campaign. I have blogged about this before, but since then we have acquired a new tree (the old one fell to bits) upon which to hang the postcards, and this time the Mayor Of Manchester was on hand to add a bit of officially sanctioned bling to proceedings.
Here’s a paraphrased summary of the things that were said and by whom:
Professor Chris Griffiths – Foundation Professor of Dermatology, Faculty of Medical and Human Sciences, Manchester University – This eminent man provided a lot of stats. One in fifty people suffer from psoriasis. You could gather everyone in Manchester with psoriasis and they would fill Old Trafford. On a full tram four people contained within it will have psoriasis (and will therefore be twice as irritable as you are about possibly the least competent transport system since the infamous wax helicopter and jelly bicycle). It affects people’s confidence, employment options, and relationships.
Helen McAteer – Chief Executive, Psoriasis Association – Thanked everyone from the University Of Manchester who had helped with the Shout Out and contributed to research in psoriasis. Research has really developed in recent years. There remains a lack of dedicated services to manage the psychological impact of psoriasis.We need to raise the profile of psoriasis and the impact that it has. We need to listen to patients as they know the impact more than anyone. We are keen to collect people’s experiences. Healthcare has changed since the start of the campaign. We need help building services like those at The Royal Free.
Paul Bristow – Communications Director, Mental Health Foundation – The Mental Health Foundation are a national charity committed to combat mental health issues. They research developing practical solutions to improve mental health services and campaign to reduce stigma and discrimination. We often hear about parity of esteem: it is important that we understand the relationship between mental health and physical health. Psoriasis is a physical health condition but has a major impact on quality of life and thus an inevitable effect on mental health. Plans for the future: continuing to raise awareness, academic research and direct patient support. We wanted to share the evidence from the postcards with doctors, patients and policy makers. Very excited about direct support for patients – helping patients understand their emotions and learn to cope with them better. Booklets documenting this will be released soon.
Dr Sandy McBride – Consultant Dermatologist, Royal Free Hospital – Shared a story about one of her patients who we will call Alan*. Ten years ago Alan checked himself in the mirror once an hour, checked his clothes for detritus, and went to hospital once a week demanding treatment. In terms of socialising he only ever went out to nightclubs because they were dark. His partner was on the verge of leaving him because he was hard to live with (not because of his psoriasis). Last week Alan was happy, he was working, was still with his partner and had an active social life. He still has some psoriasis but he is happy – he underwent 12 sessions with Doctor Mizara and that totally turned his life around. 93% of dermatology units don’t have that level of psychological support under the current system.
Dr Chris Bundy – Senior Lecturer, Behavioural Medicine, University Of Manchester – Is very proud of the campaign. Her research unit are developing a very strong bond with people suffering from psoriasis. In our Western society we overemphasises the importance of physical features. You open any magazine and you see blemish free skin. That is the back drop with which psoriasis patients live their lives. Patients feel judged and people recoil from them thinking that the condition is contagious. These things happen on a daily basis and this affect how patients feel as an individual. Skin conditions rarely escape people’s notice and people make judgements about suffers as a result. People with psoriasis often don’t talk about it and spend time, money and energy hiding their psoriasis. Psoriasis patients talk about shame in a way that those with, say, diabetes do not. There are high levels of anxiety and distress amongst patients. This level of distress is comparable with that found in people with other long term conditions like heart disease and cancer – but people with those get first rate psychological treatment. People with psoriasis have repeatedly not been given access to the treatment they deserve. Those who have had access to these services recover better and quicker and become more productive individuals – back to work quicker and thus contributing to society with labour and tax. Therefore the treatment is cost effective.
Me – Professional Gobshite, No Medical Qualifications Whatsoever – Blah-de-blah, wordplay here, cheap laugh there, self derogatory aside, slight stutter, yaketty-yak. The End.
In relation to some queries about my post about psoriasis and mental health, a couple of you asked how the “1 in 10 psoriasis patients consider suicide” stat compared to that for non-psoriasis sufferers. Well, for those lucky folk it is 1 in 26 or 27 – so quite a marked difference I am sure you would agree.
I have been banging on about Dr Mizara and derma-psychology without much context, so here are a few words about psoriasis and mental health.Opening this world up to me has been a revelation, and after a lengthy spell under her guidance, I think I have made improvements which help to alleviate the stress and black feelings that often accompany this otherwise marvellous and hilarious condition.
All of the following figures have been thoroughly researched and collated and have come my way via the See Psoriasis, Look Deeper* group on which I sit alongside various experts:
(i) 1.8 million people in this country have psoriasis, and it affects men and women in equal measure.
(ii) Of those 1.8 million, 20% are on antI-depressants or something similar (in the interests of full disclosure, I will tell you that I am not among that 20%)
(iii) 32% have problems with alcohol (hmm, I may be close personal friends with at least some of that 32% – we might even holiday together occasionally).
(iv) 33% experience depression and anxiety (I belong to all the best clubs).
(v) 85% feel annoyed by the condition (no surprise there – an itchy, painful, unsightly thing is found to be annoying: what’s next? 85% of people find Jeremy Clarkson to be a boorish git? Shocker!).
(vi) 20% report rejection and stigmatisation as a result of having it (I’m always being rejected and stigmatised but I tend to blame me for that rather than my psoriasis).
(vii) 10% have contemplated suicide (yes).
Psoriasis treatment needs to look at more than the surface manifestation of the condition. No amount of creams will get to its cause – and if you are sent away with a massive prescription but no examination of your emotional welfare then you are being shortchanged. If your GP regards psoriasis as merely a skin ailment then they are wrong. This isn’t to criticise GPs by the way – in training the average GP barely scratches the surface of dermatology, let alone psoriasis: and as we all know, scratching the surface merely irritates it (ho, ho).
The basics of this are obvious. If you have a blemish people notice : they stare, they react, they recoil.This makes the sufferer self-conscious and creates feelings of low self-esteem. Low self-esteem often leads to lifestyle choices (demotivated regarding exercise, recourse to alcohol, eating crap) which mitigate against successfully tackling the skin problem. These choices can also have side-effects which produce other conditions that have been found to be heavily related to psoriasis (like heart disease and diabetes). And it’s not just the lack of kindness from strangers that is problematic: psoriasis can adversely affect everything from family holiday plans to sexual relationships (“Do you wanna come back to my place, but bear in mind that you may have to hoover yourself afterwards,” is never going to be the chat up line of the century). To be frank, it is there all the time.
And this isn’t about people feeling sorry for themselves and needing to buck up: and tackling it would be financially beneficial in the long run.Society would benefit from psoriasis sufferers not taking as much time off work as they do (up to 26 days a year are lost from patients being unable to work – at its worst it hurts like hell) or being unemployable (your options are limited if your appearance is deemed unpleasant or wrongly assumed to be unhygienic). Unemployment is three times more likely for a psoriasis sufferer than for the scab free – a functioning, tax paying patient whose psoriasis is under control is a much more cost effective member of society. Also, getting to the nub of a patient’s mental health issues will save the NHS money in the long term as other, expensive treatments are needed less.
Psoriasis treatment is time consuming and requires a huge investment from the patient: when I was
having light treatment I was having to commit to three days a week in my box of delights. As a self-employed person I was fortunate enough to be able to wangle this but it was still difficult. For someone who isn’t a professional gobshite and has things to do during the day it must be a nightmare.
For more on See Psoriasis, Look Deeper, go here,* but if you are a psoriasis patient you must not feel bad about bringing up any feelings of anxiety or stress that you may have, as they are very likely linked to your condition. Once this is understood and acted upon, coping strategies can be implemented. For years I feared much of my difficulty with seemingly straightforward Life Issues was because I was a useless twat. Actually it turns out that it was because I had psoriasis.
The fact that I am a useless twat has very little to do with it.
*Do follow this link – there’s much more information and a lot of pictures.
My previous entry – which was just letting off steam really – got generally positive repsonses which was a surprise (well, the volume of feedback was anyway).There was the odd person Tweeting who said they had negative experiences of the NHS but didn’t go into detail. I have had similarly grotty encounters, but to me the conclusion from that is that the NHS needs change and support not obliteration. Frustratingly I never ascertained whether the critics had read my blog or just reacted to the positive headline that was being reTweeted. Such necessarily pithy excahnges reward no-one, get nowhere and are ultimately a waste of energy and sadly reflective of the level of discourse we now engage in. “I like the NHS”, “I don’t”, “Oh”. Come back nuance, all is forgiven.
Anyway – I am being sent gifts. I have done a consultation for Exorex who have got me to write an E-book chapter for a campaign they are spearheading (I have covered this is previous blogs). They did a photoshoot to publicise this and the results pepper this blog entry. I also got a goody bag of their products. I have not used them yet, because I was also recently contacted online by a lady whose company have launched a cream called Dermalex which she sent me and so I gave that a go as I’d left my other stuff in a different city. Is it any good? No idea, as I am of course taking other things and am not in the habit of making endorsements, but it certainly isn’t uncomfortable and greasy like many creams, and my psoriasis hasn’t exploded nor has my head fallen off, so there are certainly positives (and when someone gives you something it is nice to acknowledge the fact). Fun though – Hollywood stars get free Rolex wristwatches: I get showerd in unguents and emollients. I’m an A List biological disaster. As well as the chapter, your celebrity leper has also written a piece for a forthcoming Guardian health suppliment : it should be out fairly soon.
Which brings me to my latest health check. I am still taking the adalmumab and so have to have regular blood tests … and I resolutely failed the last one.Drinking without due care and attention I think. My liver fat count is at about 147 (it shouldn’t be higher than 61) and my cholesterol is at 8 (highest should be 5). I will have the exact figures later (they’re in a different city along with my creams and, more frustratingly, my headphones!). So this means no more booze till my readings are substantially reduced (which will take a few more months of check-ups and blood tests). The thing is, I have only been drinking at the end of the night (I never do it before work) and I have been going to the gym, exercising at home and dieting. I am a stone overweight and despite laying off cheese and carbs and, oh you know, joy, my belly is still unsighly in its distendedness. I’m even forcing down fruit , vegetable and flaxseed smoothies for breakfast but it isn’t shifitng.
Nurse Annie popped in when I was lamenting these various woes and said that abalimumab can slow the metabloism and manifest as a slight paunch in the belly, so that is contributing to my difficulty in getting rid of this stubborn stone. Great: my treatment once again seems to be responsible for something about me that I dislike. So I have to step up the dieting and exercise. And not drink. Remind me, what’s the point in being alive? I’m knocking back a peppermint tea as I type this : oh yeah, feel the buzz. I am at a stage in life where a treat is having a second Ryvita. My disposition therefore, is hardly sunny. I’d kidney punch Bambi for a G & T and a slice of bread (yes, bread, that’s not asking too much is it? Oh, it is). My skin, though, is in pretty good nick.
Which provides a timely reminder about the link between psoriasis and mental health (courtesy of the Psoriasis Association ; follow them on Twitter @Psoriasis UK):