{"id":32267,"date":"2014-09-05T15:44:43","date_gmt":"2014-09-05T14:44:43","guid":{"rendered":"https:\/\/blogs.bmj.com\/bmj\/?p=32267"},"modified":"2014-09-12T09:03:43","modified_gmt":"2014-09-12T08:03:43","slug":"richard-smith-psoriasis-is-my-health","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/bmj\/2014\/09\/05\/richard-smith-psoriasis-is-my-health\/","title":{"rendered":"Richard Smith: \u201cPsoriasis is my health\u201d"},"content":{"rendered":"

\"richard_smith_2014\"<\/a>To most doctors psoriasis is a disease to be fought, contained, and even cured, but is this far too narrow a view? John Updike, one of the greatest writers in English of the past century, had psoriasis for almost all his life, and he writes in Self-Consciousness<\/em>: \u201cPsoriasis is my health. Its suppression constitutes a poisoning of the system, of my personal ecology,\u201d and \u201cpsoriasis is normal, and its suppression abnormal.\u201d How can doctors who study disease and a patient who sees deep inside himself have such different views? The patient comes first, and so it is the doctors who must learn.<\/p>\n

It would be too simple to say that Updike liked his psoriasis. He spent his life battling it and trying to conceal his scales. He felt himself to be a \u201cmonster\u201d and it stopped him learning to swim until he was at Harvard, when it was humiliating not to be able to swim. He felt too that it was a \u201cself-generated scandal.\u201d But psoriasis kept him out of the army, for which he was grateful, even though he recognised that it \u201cwould handicap no killing skills.\u201d<\/p>\n

Updike developed psoriasis aged 6 in 1938, and his doctor\u2014who himself had psoriasis and regretted that it stopped him being a surgeon\u2014prescribed Siroil, which smelt and was useless. Updike then discovered the power of the sun, and for much of the rest of his life sought out the sun to clear his scales, even travelling to the Caribbean when it was\u00a0winter in the United States. \u201cMy condition,\u201d writes Updike, \u201cforged a hidden link with things elemental\u2014with the seasons, with the sun . . . \u201d<\/p>\n

In the 1970s Updike was living in New England, close to the Ipswich beach that \u201ccured\u201d him in the summer, and so was one of the first to benefit from PUVA (psoralen plus ultraviolet A), which was developed at the Massachusetts General Hospital. Eventually, however, he suffered from photoxicity, which \u201cfeels like sunburn of the muscles\u201d and which caused him to walk \u201clike a Japanese woman.\u201d So he was switched to methotrexate, which meant he couldn\u2019t drink alcohol.<\/p>\n

Updike believes, however, that his psoriasis was the making of him. He observes that Italians call it morbus fortiorum<\/em>\u2014\u201cthe disease of the stronger\u201d\u2014and writes:<\/p>\n

Whenever in my life I have shown some courage and originality it has been because of my skin. Because of my skin, I counted myself out of any of those jobs\u2014salesman, teacher, financier, movie star\u2014that demanded being presentable. What did that leave? Becoming a craftsman of some sort, closeted and unseen\u2014perhaps a cartoonist or a writer, a worker in ink who can hide himself and send out a surrogate presence, a signature that multiplies even while it conceals. <\/em><\/p>\n

Why did I marry so young? Because, having once found a comely female who forgave me my skin, I dared not risk losing her and trying to find another.\u00a0<\/em>Why did I have children so young? Because I wanted to surround myself with people who did not have psoriasis. Why, in 1957, did I leave New York and my nice employment there? Because my skin was bad in the urban shadows, and nothing, not even screwing a sunlamp bulb into the bathroom socket above my bathroom mirror, helped. Why did I move, with all my family, all the way to Ipswich, Massachusetts? Because this ancient Puritan town happened to have one of the great beaches of the North East, in whose dunes I could, like a sin-soaked anchorite of old repairing to the desert, bake and cure myself.<\/em><\/p>\n

Psoriasis \u201cmade him into a prolific, adaptable, ruthless enough writer.\u201d It was the source of his creativity. \u201cWhat was my creativity, my relentless need to produce but a parody of my skin\u2019s embarrassing overproduction?\u201d His thick skin allowed him to shrug off rejections. And \u201chaving so long carried a secret behind my clothes, I had no trouble with the duplicity that generates plots.\u201d The dualism between his skin and himself appeared to him \u201cthe very engine of the human.\u201d<\/p>\n

Perhaps it\u2019s too much to expect doctors treating patients with psoriasis to carry all these thoughts in their heads, but the great doctors are the ones who can begin to understand exactly how patients feel about their disease and adapt their management and conversation accordingly. This applies not only to psoriasis but to all conditions, especially perhaps mental health problems. Very few patients have Updike\u2019s power to analyse and describe how they feel about their diseases, but that\u2019s why it\u2019s so important for doctors to read accounts like Updike\u2019s. Anatole Broyard is another who has written deeply<\/a> about his illness, proposing that \u201cTo get to my body, my doctor has to get to my character. He has to go through my soul.\u201d<\/p>\n

Writing his memoirs entitled Self-Consciousness<\/em>, which were published in 1989, Updike imagined how he would become \u201ctoo ill for all these demanding and perilous palliatives,\u201d and how \u201cthe psoriasis like a fire smouldering in damp peat will break out and spread triumphantly; in my dying I will become hideous, I will become what I am.\u201d<\/p>\n

Richard Smith<\/strong>\u00a0was the editor of The BMJ until 2004. He is now chair of the board of trustees of icddr,b [formerly International Centre for Diarrhoeal Disease Research, Bangladesh], and chair of the board of Patients Know Best. He is also a trustee of C3 Collaborating for Health.<\/em><\/p>\n

Competing interests: Nothing further to declare.<\/p>\n","protected":false},"excerpt":{"rendered":"

To most doctors psoriasis is a disease to be fought, contained, and even cured, but is this far too narrow a view? John Updike, one of the greatest writers in […]<\/p>\n

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