Guy Kennaway: My battle with psoriasis
Its sufferers have been stigmatised for centuries – and there’s still no cure for the skin disease
Tuesday 01 July 2008
I was first stricken with psoriasis, the illness that makes you shed flakes of skin, in my twenties, when I was at university in Edinburgh. Its chosen arena for battle on my body was my face. Over time, bad skin became my companion, and like most friendships, we had our ups and downs. I often hated it, and was furious at the way it made me look so crusty and red, and made me withdraw from so many things I wanted to do. But then at other times, when my face magically cleared and I looked in the mirror to see my eyes and nose and mouth rather than just a collection of nasty, peeling red patches, I was so thankful to it, and felt a great surge of love for my friend, my merciful skin disease.
OK, I admit it: I was caught in an abusive relationship. But when you are in one of these things, it's so hard to see it and to understand what a prat you are for sticking around. But, of course, I couldn't leave. Short of searing my face with a blowtorch (and I know of a sufferer who was so desperate that they tried to do just that), I am stuck with it and stuck in it. I can't leave.
Writing a book about psoriasis risks turning my into some kind of spokesman for sufferers, which I am happy to be, particularly when nobody else wants the job. The American Psoriasis Association has been searching among Hollywood celebs for a figurehead for years. Nobody wants the gig – surprise, surprise. After all, which Hollywood actor or actress wants to be known as "The Face of Psoriasis"?
We psoriatics have been picked on and marginalised for centuries. A list in the Bible of the causes of psoriasis says it all: gossiping, murder, making a vain oath, having illicit sexual intercourse, pride, theft and stinginess. In the course of my research, I discovered that even in the 20th century people with psoriasis were banished to leper colonies. Nowadays, the myth persists that it is caused by our own inner weakness, and that there is nothing really wrong with us. Apart from the notable and brilliant exception of The Singing Detective, I couldn't find a single positive depiction of a person with a skin disorder in literature or film. Quite the reverse: the incidence of vicious skin disorders among villains is depressingly high. Star Trek is particularly well populated by evil characters with bad skins. I am surprised there wasn't a dermatologist on the Starship Enterprise.
Even Zadie Smith, that champion of oppressed minorities, does not come to our help. In her novel On Beauty, Bailey, the boss of Tower Records in Boston and a tedious sex pest, has "skin on his hand [that] peeled and bled, the worst example of the psoriasis that also showed up in milder patches on his neck and forehead". And 107 pages later, when the hero Howard takes the hand of his old father Harold – the novel's only out-and-out racist bigot – guess what? "He felt the little rough patches of psoriasis."
In my attempt to find a cure for my own skin, I met many other sufferers in various waiting rooms and clinics. I learnt that there are hundreds, if not thousands, of people who are consuming huge amounts of energy concealing their bodies from the people around them. I know of one woman who tried for months to keep the plate-sized plaque of psoriasis on her buttocks secret from her fiancé in case he changed his mind about marrying her.
I spoke to scores of doctors and healers, but the only thing I learnt was that nobody agrees on what causes it, and nobody can work out what cures it. This makes psoriasis an easy touch for peddlers of alternative therapies. Some were cynical exploiters of our plight and others were well intentioned, but still, at least in my case, utterly useless.
Nothing in the world of herbs, weird Swiss drugs, mineral extracts, tonics, strange diets, acupuncture, hypnotherapy, magnetic field therapy, oxygen therapy, chelation, reflexology, chiropractic, physiotherapy or massage is powerful enough. We need stronger magic. These therapies are often dispensed by good, hard-working, honest practitioners, who want nothing more than to give relief to me, but the therapists have little idea what they are up against. They are climbing Mount Everest in flip flops. They are no match for psoriasis – not the most dangerous, or even the most powerful, but the smartest disease of them all. It runs rings round all of them, as it does around the conventional doctors and, indeed, the sufferers. This is because psoriasis is the grand master of illness, the Garry Kasparov of disease.
I remember once leaving a herbalist clutching some burdock and sarsaparilla in a brown paper bag. I wasn't exactly hopeful at the time. A man from the council was removing bubblegum from the pavement with a machine called the Gumbuster, a high pressure hose that blasted the pink spots off the stone. I watched the spray-gun buck with the power of the water. I felt like saying: "If I lie down and undress, you wouldn't give me a waft with that would you?"
I discovered some incredible cures, from the outright entertaining – the yellow diet, on which you can only eat things that are yellow – to the frankly sinister – a man in Switzerland who claimed to have a cure, but one that is so repellent, so disgusting, that the patient has to be sedated before treatment so they don't know what they are going through. Apparently, it was not humanly possible to tolerate the four-hour therapy while conscious, but one session is all you need. There is a lot of speculation on internet message boards about what the doctor actually did during those four hours. Most people believed the patient was put in a tank and immersed in something repugnant – though what, precisely, was the subject of debate. Those who had been through the experience said they were anaesthetised in a preparation room on a trolley which they believed was then wheeled into the treatment room where the secret apparatus – whatever it was – stood. One said he thought he smelled horse manure. Some people said it was genetically modified spiders (possibly fed on horse manure – hence the smell), millions of them, crawling all over you, eating dead skin and secreting vitamin D from glands in their thorax. Some said it must be horse manure in the tank, and others that it was human shit.
When you can't find a cure, you worry that the answer lies inside you. John Updike, who suffers from psoriasis and has written about it, says it's a condition that turns people in on themselves. I often think it's like having a bad dose of the human condition. It's incurable, and gets worse the more you think about it.
My psoriasis has guided me through life and made many choices for me. It kept me from the beach and from swimming – both of which I had loved as a child – and made me take up scuba-diving instead, with its concealing rubber suit and mask. It led me towards the only other sport where I could comprehensively hide my skin with masks and goggles and gloves without attracting any attention: skiing, for which I thank it. It kept me away from job interviews, romantic dinners, overlit rooms, and anything to do with cameras.
It gave me a tendency towards white or pale clothes, which hide flakes of skin, when I much prefer to dress in dark ones. I was drawn towards other people with bad skin, out of sheer sympathy with their pain, and eventually married a woman who had suffered from acne. It forbade me to work in sales or even among other people in an office, so I was led to that most solitary of professions: writing. I do not know if I would have done this were it not for my bad skin, but I know I'd rather be stared at by an empty page than a stranger.
I have had to live in a world which thinks that people get the skin they deserve. When Jeffrey Archer was on trial for perjury, it was gleefully reported that he had broken out in psoriasis. The word always leaps out at me from the newspaper. Jeffrey's condition (I nearly wrote "Poor Jeffrey's condition") was presented by the tabloids as the inevitable consequence of simply being Jeffrey Archer, and by the broadsheets as the truth seeping through his skin no matter how hard he tried to hide it.
People do not get the skin they deserve. I have seen too many children with horrific afflictions to entertain that notion. I have seen parents whose lives have been savaged trying to raise a child with really bad skin.
For me, things changed at the Dead Sea, where I went to a clinic where you sunbathe naked on the roof of a hotel. I'm not sure if it was the intense light, the mineral rich air, or the presence of other people in the same boat as me that did me good. I don't advocate it as a cure, but would definitely recommend anyone with psoriasis to give it a try on the basis that it is no more of a waste of time than any of the many other things they have, no doubt, tried. The atmosphere in a hotel filled with people with bad skin was liberating. The bar of beauty was set low – all of us helped one another over it, rather than clattering through it as we did back home in the real world.
On the roof, men and women were segregated. In the men's section, I met guys so raw they look liked they'd been dipped in boiling oil. But the roof was the kind of place where people cut you some slack. Stripping off for a psoriatic is never easy, and to make matters worse, because psoriasis loves the nooks and crannies of the body, you had to lie in obscenely contorted positions to get the sunlight on them. One guy, whose skin was fully covered by either tattoos or psoriasis, happily played checkers on all fours, head down, bum in the air, his buttocks cleverly parted with a cigarette lighter so that the sunlight – which was meant to be beneficial – shafted right down into his open crack. We were the shyest people in the world performing like wild exhibitionists on a roof in Israel. And it was there that I felt for the first time, among the revelatory and kind people in the hotel, that I was thankful to have psoriasis. It had brought me new friends, experiences and stories.
Recently, my skin has been very clear, which is embarrassing as I have just written a book about having psoriasis. I know it is not vanquished, but has retreated, like a guerrilla force, to plan a new ambush. In fact, its departure at this sensitive time could be its new tactic to humiliate me. A man in a radio interview to publicise the book said to me: "You don't look like you have it very badly," and I felt angry at not having psoriasis – that's the power of this illness.
It is so trite saying that the cure of this incurable disease is to learn to live with it. I know that doesn't help anybody who's feeling wretched about their skin right now. But I am hoping that by making a book about my journey with psoriasis that sufferers and their friends will, most of all, not feel alone. If that happens, I will be proud to know that I have done something to bring our lonely community some solace.
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