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from Daniel H.

Here is something I wrote recently (at god-knows-when a.m.) when I felt particularly depressed. Even though the readers on this site go through the same feelings, I must say that I am usually a very happy and sociable person, and I generally keep a reasonable attitude about our disease ... but feelings of unattractiveness can become very real.

I'm 26 now, and have had P for 10 years, basically all of my sexual life. May we all find partners who genuinely love us, despite the crusty veneer. Those of you who have found that person, please tell them every day how much you appreciate and need their love and support. And may we all have the good sense not to invest too much importance in relationships we cling to solely for the comfort of simply having somebody, even when that person is not capable of reciprocating our love. I don't feel like I should add an optimistic, cheery note dulling the edge of the following, because this is a description of a very unfair, painful part of our lives. I will close, however, in saying that we are all stronger because of this affliction, and we have already gained an acute sympathy with the unfortunate, which is a quality of the most mature, sophisticated and wise people in this world, most of whom are in their twilight years. I wish you all the best. -Daniel H.


It is acutely devastating, because it makes you feel unworthy of life’s most basic act of communion — being touched. No matter how much you convince yourself it might not seem as bad to others as it does to you, the cruel fact that you are covered with scales always hangs overhead. I’ve had sexual encounters when my enjoyment was entirely determined by how little my partner touches me. I see myself in their shoes, and I realize that I, too, would be horrified if I were caressing someone and my hand encountered a field of scabs. I’ve been asked twice if it’s contagious (it’s not) and even though the very acknowledgment of it by another is, in some ways, liberating, the question resonates in my mind: My god, how can they stand to be sleeping with a leper? My skin feels rough and dry, but can be helped with lotions and creams. It looks, however, so repulsive, that I am absolutely steadfast in maintaining that no one — and I mean no one — ever be subjected to the appalling sight of my naked body. Nighttime offers the most opportunities for deception. Hiding is easier in the dark.

I am so jealous of the insouciance with which most people pursue their social interactions. My whole life is spent avoiding discovery, and I am very careful to maintain my hidden fortress. Sometimes, unavoidable cracks appear in the walls, usually in the form of red spots on my face. And I am aware that everyone, even those who do not ask me about it (those insensitive bastards) see it and know something is wrong. Often, in crowds, I can study people’s skin and admire it close-up. Some people have flawless, radiant skin, and most people have decent skin, but very few have repulsive hide like mine. I am often in awe of those who saunter down the streets without sleeves, in shorts — sometimes even without shirts.

It is largely a cosmetic disease, unlikely to endanger your life. But it is such a cruel, constant stab at your emotional health and it is such a vicious, indefatigable parasite gnawing at your confidence that sometimes you’d swear you’re experiencing physical pain. No matter how much you tell yourself it doesn’t matter, that you’re a well-developed person, that those who love you will accept it, sometimes you are smacked with the cold, harsh reality that your skin is indisputably ugly. And that tears you apart.


Ed’s Response: I remember these feelings, Daniel. My "nocturne" took shape over a number of years as a diary. I sometimes escaped into fantasy in which I was a living Jekyll/Hyde stuck, momentarily, on the Hyde side of the dichotomy.

Your closing lines articulate precisely our state of mind when we are at the edge of the precipice of depression: ...sometimes you are smacked with the cold, harsh reality that your skin is indisputably ugly. And that tears you apart. Or, it doesn’t tear you apart. In my own case, I found that after sobering up (take that both figuratively and literally) I wasn’t torn apart. I was pretty much the same schmuck I had been prior to the onset of the depression. Eventually I learned to pat myself on the shoulder (there, there) and step back from the edge to find safer places to stroll.

While there is little argument that the emotional effect of P can be more devastating than the physical aspects of the disease, for the sake of accuracy I want to point out that physical disability and real pain are both associated with certain forms and severities of P.

Thanks for sharing your Nocturne with us, Daniel. -Ed

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