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: “Psoriasis is my health. Its suppression constitutes a poisoning of the system, of my personal ecology,” and “psoriasis is normal, and its suppression abnormal.” 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.

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 “monster” 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 “self-generated scandal.” But psoriasis kept him out of the army, for which he was grateful, even though he recognised that it “would handicap no killing skills.”

Updike developed psoriasis aged 6 in 1938, and his doctor—who himself had psoriasis and regretted that it stopped him being a surgeon—prescribed 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 winter in the United States. “My condition,” writes Updike, “forged a hidden link with things elemental—with the seasons, with the sun . . . ”

In the 1970s Updike was living in New England, close to the Ipswich beach that “cured” 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 “feels like sunburn of the muscles” and which caused him to walk “like a Japanese woman.” So he was switched to methotrexate, which meant he couldn’t drink alcohol.

Updike believes, however, that his psoriasis was the making of him. He observes that Italians call it morbus fortiorum—“the disease of the stronger”—and writes:

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—salesman, teacher, financier, movie star—that demanded being presentable. What did that leave? Becoming a craftsman of some sort, closeted and unseen—perhaps 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.

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. 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.

Psoriasis “made him into a prolific, adaptable, ruthless enough writer.” It was the source of his creativity. “What was my creativity, my relentless need to produce but a parody of my skin’s embarrassing overproduction?” His thick skin allowed him to shrug off rejections. And “having so long carried a secret behind my clothes, I had no trouble with the duplicity that generates plots.” The dualism between his skin and himself appeared to him “the very engine of the human.”

Perhaps it’s 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’s power to analyse and describe how they feel about their diseases, but that’s why it’s so important for doctors to read accounts like Updike’s. Anatole Broyard is another who has written deeply about his illness, proposing that “To get to my body, my doctor has to get to my character. He has to go through my soul.”

Writing his memoirs entitled Self-Consciousness, which were published in 1989, Updike imagined how he would become “too ill for all these demanding and perilous palliatives,” and how “the 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.”

Richard Smith was 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.

Competing interests: Nothing further to declare.