by Joe Thomas
Dear Ed: I was surfing the web when I thought about doing a Yahoo search of psoriasis. Your site came up ... and here I am.
My name is Joe Thomas. I am 27 and have had psoriasis for almost 9 years. I first showed signs when I was a freshman in college. A spot on my navel, an itchy, bleeding scalp.... wow, it started so small :) All of my body parts have been affected over the years. I respond fairly well to topical treatments and ultraviolet light, but, well, you know....
About 5 years ago I suffered from a sore toe. I think I hurt it playing basketball. It hurt for weeks. I thought I had broken it. It wasn't until I tried to start my car one morning that clue #2 appeared. As I turned the key in the ignition pain shot up my fingertips and wrist. Wow ... REAL pain, too.
Lucky me ... not only psoriasis ... but psoriatic arthritis ... at 23. I think I calculated the odds to be about as good as winning a small lottery. Well, I do not want to go on too long about my history. I do want to commend you on this page. Humor, used as acceptance, is one of the many ways that I have dealt with many hardships in my life, psoriasis being one.
There were the stages of hermitism. I did not want my friends to see me, well, parts of me. When it was on my face was the hardest. I could cover most anything else up. I remember playing basketball in June wearing a long sleeve shirt and sweatpants. What a sight! :)
I do not remember when the acceptance came, but it turned the tide of battle between my "overachieving" skin and me. Honestly, there is very little I can do about it ... so why fret? I began being more active so that I HAD to keep up the topical and ultraviolet treatments.
I do want to share a quick story. I read an article here about a man whose wife has psoriasis and they were thinking about kids. The question of heredity and psoriasis was raised ... and it should have been. That is a very valid, albeit awkward, question. No one who has psoriasis would truly wish it on even their worst enemies, much less their own flesh and blood. I wanted to the following as a kind of support for his situation.
Once, during a particularly bad flare-up, I was home from college visiting my parents. My dad saw that the plaques covered my chest and back about 85%. He couldn't even look at me. He just turned around and walked out. I had just stepped out of the shower and was getting ready to go somewhere. After I dressed I went and asked him what he had wanted to tell me. I saw that he had been crying. I have one of those dads that NEVER cried. His mother's funeral had been the only other time I had ever witnessed it. I thought something was wrong ... something with him or my grandfather. After a little prodding he pointed to my chest and said that that had broken his heart.
He then started to apologize for me having psoriasis. That he wished that I had never shown signs ... never developed it. That he didn't want me to have it. He could barely speak the tears were coming so fast. I started to cry, too. That cry we sons have when we see our dads in pain.
My dad has psoriasis. He developed it in his college years, too. He used to call them "ow-ies" when I was an inquisitive youngster pointing to the big, red scaly patches on his legs or elbows. So now, in his eyes, mind, whatever... he was to blame for my problem.
In a sense, he was right. Almost certainly he had passed the disorder (sorry, I refuse to call it a disease) down to me. If he had not had psoriasis I would probably not have had it. But, hell, if my choice is between being here and not being here ... well, that's a no-brainer.
I sat down on the floor next to his chair and told him that the only way he could have made sure that I didn't have it ... was to not have me. He and I both knew that psoriasis was not a good thing. That it was a part of you forever. But, I told him, so was my face, which looked like his, so were my intelligence, my compassion, my sense of right and wrong, my self-discipline ... all of these were also things that he had given me.
Parents need to understand that this is not a situation that needs a finger of guilt pointed to. No one knows why some people have psoriasis and others do not. I realize now that my 18 years of being psoriasis-free should have been cherished. But, just as if my parents had never had me, you don't know "good" until you know "bad."
Keep up the good work, Ed. -Epidermically overachieving, Joe Thomas
Ed's Reply: Thanks for sharing your story about Dad. It says about everything needful with regard to P/heredity/responsibility/guilt. A few weeks ago my mother informed me the "waxy buildup problem" my seventy-year-old father has suffered in his ears most of his adult life was finally diagnosed as psoriasis. His doc prescribed Lidex solution and for the first time it has cleared up. The man's been living for forty-six years that I know of with a misdiagnosed problem! So now, next time I go home, I can approach him, point a finger at him and go, "YOU! I knew all along it was YOU!" My Dad, being the tough Merchant Marine type, is likely to snort back, "Live with it, kid. I do." Then he'll go paint the fence or something. (Different strokes for different Dads.)
I liked your expression, "hermitism." That so aptly describes what many of us go through the first time P hits us big time. I remember the ceremony I made of going through my closet and removing all the short-sleeve shirts and cutoffs.... Ever since checking to make sure the shirts that attract me in the department stores are long-sleeved.... Always pausing to ponder if my travel destinations "require" skin exposure if I am to fit in.... Making excuses to avoid pool parties, long weekends at the lake, mid-afternoon summer time cookouts with volleyball games.... All characteristics of "hermitism," no? Every now and again I run into someone in public who exposes their psoriasis without hesitation and I am amazed at the evident toughness of their egos or social insensitivity. I am at the same time shamed by them and ashamed of them. I wish I had their toughness at the same time I am embarrassed by their willingness to be so outward about their (our) malady. Sometimes I feel like giving them a copy of Flake. But really, I'm afraid to. I have a sneaking suspicion they'd skim the book, grunt, and ask, "Why the big deal?" Worst thing is, I'm not sure I could answer that question. -Ed