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Be A Role Model for P-Kids
from Laura B.

Backstory:  Lessons Learned by a P-Kid Mom

Hi Ed.  Yes it is me again. The outspoken Psormommy. Well this time, I would really like to vent my frustrations at (of all possible people) other Psoriatics. As you know I have spent the last seven years (my son's entire life) trying to get him to understand that P is nothing to be ashamed of and that there is no need to cover up something that is not his fault.

Let me start off by saying that we met a man a few days ago. He was completely covered, long sleeve turtle neck, long pants — you know the typical flaker’s wardrobe.  However, by looking at his face and hair line, which was receding, I knew he had P. Hunter had never seen anyone else with it in real life, just pictures, and he noticed the scales immediately. He went over and proceeded to ask the man questions.  The man seemed very withdrawn and not willing to answer the questions until Hunter flat out asked if he had psoriasis. The man looked at my son in amazement and said yes.  Hunter then proceeded to show this man his spots, lifting up his shirt and showing his tummy and back etc. and said that he did too and that he had had it his whole life. 

The man smiled uncomfortably and got up and left.

I know that my son's questions made this man feel very awkward and I know he did not like the fact that Hunter was exposing his "secret."  I can completely understand. I know the looks, stares and even the comments that are part of P. I have seen the pity and shock in people's eyes when they see the scales and cringe inwardly before turning away, often times in disgust. I know what it feels like to want to hide those red and white spots that plague a flaker’s skin. I did it too.  I hid my son's skin for a long time because I  hated those looks and comments just as much as anyone else.

However, I got to a point where I realized it didn't matter anymore. I was going to let my son shine in all the glory that he could.  And that even meant I was not going to hide him from anyone anymore. I would not let him hide himself either. I began to teach and show him that skin falls off of everyone. It is important only because it holds the more valuable things inside of us like our minds, hearts, and feelings. I will even let him wear summer clothes in the winter, within reason. If it is not too cold, he wears shorts and T-shirts etc. even though he flares to close to 90% covered during this time of year. I do this so he can learn not to be self conscious of what his skin looks like.

I will admit that in a way I felt sorry that this man was so self conscious of his P that he let it run how he lived his life. Then a part of me began to be very angry when Hunter began to ask why the man left and why he acted the way he did.  I couldn't give him any answer that would satisfy his curiosity.  He just could not understand why the man didn't want to talk to him about his P and why he just tried to hide it.  I think that he started to really question if it was okay to show people his spots and talk about them when a grown up wouldn't even do it.

My frustration is this:  How do I teach Hunter that Psoriasis is something that your skin does and that it has nothing to do with how or what you are, if adults who have psoriasis continue to try and hide it from the world?  I realize and understand why they do it. My heart just aches when I hear of others suffering through it. I also understand there was a stigma attached to looking different for a long time.  I don't want my son to live or feel that way. I want him to not be ashamed of who and what he is.  If he were African American or Asian, I would not like him to feel self conscious about what his skin looked like and I truly feel that he shouldn't feel that way about Psoriasis either. After all, he has about as much control over the fact that he has Psoriasis as his does the color of his skin.

I truly wish that people with Psoriasis, especially adults, would understand there are little eyes on them, watching how they act towards this. I can try and do all I can to show Hunter that there is no shame. But when others with the same thing, say by their actions that there is, this speaks far louder than anything I, as a person without psoriasis, can ever say to him.

I guess the real reason I am writing this is to plead with other psoriatics to please be careful about how they present — or hide — their condition before children.  Trying to hide and cover up what we have no control over is like trying to paint ourselves another color just because we don't like the color of our skin. Yes, P is a part of you, but it isn't what you are. After all, we never know just who is looking up towards us for guidance.  Actions speak far louder than words at times and if you as an adult show that you are not ashamed of it then children can realize that there is no shame as well.  You may not see who is watching you or whoever is watching may not realize the effect you have on them until years later. (Maybe they may get Psoriasis later in life and remember your strength then.)

I realize that I really don't have any room to criticize the way anyone chooses to live their life, especially since I don't have P myself.  But I would like to let people understand that there are people out there who don't care what your skin looks or feels like. You are just as special and wonderful as anyone else.  You can make a difference in someone's life and you can be happy.  Imagine the strength and courage you would show a young child suffering from P if you raised the cuff line on a shift, or wore shorts just once when you never would have before?

Anyway, thank you for letting me vent a little and I hope you, and others, realize that I am not saying that they are wrong or bad for covering up. I understand why it is done. I would never hate or judge anyone just because they get tired of the looks, stares and comments. I just hope that one day, it won't have to be that way because it has become the norm to see people who are not all the same and that is perfectly all right. -Laura  B. (a.k.a Psormommy)

*****

Ed’s Response:  Good to hear from you again, Laura, and thanks for sharing this encounter and your concern.  To be honest, it made me feel mixed emotions.  Of course we would all like to think the way we handle our flaking is properly tutorial to P-kids, but the fact is we may not be good examples unless we make it a point to be — which, I guess is your point!

I want to reproduce for you here a short chapter from Flake: Confessions of a Psoriatic.  It relates an encounter I had in the early 1990’s.

“I used to complain…”

I was in Atlanta on business.  My client noticed a flaming lesion on the back of my hand.  “What’s that?” he asked.  I told him I had psoriasis.  He was suddenly keenly interested.  How long had I had I t?  How extensive was it?  What doctor did I go to?  What treatments had I tried?  After a minute or so of this staccato inquiry I asked, “Why are you asking?  Do you have psoriasis?”

To answer that question he took me to his apartment for lunch.  His wife was at work, his nine year old daughter was at school.  We made sandwiches that we ate in the kitchen, then he said, “Come with  me, I want to show you something.”

He led me to his daughter’s room.  A suspiciously neat little girl’s room with stuffed animals on the made bed, a doll house in the corner, flakes all over the carpet.

“Your daughter has psoriasis?” I asked.

 “In extreme,” he said.  “We vacuum this room every evening.  This is how it looks by the time she leaves for school the next morning.”

I had never come in contact with a child who has psoriasis.  Still haven’t, really, but this proximity to the reality of it stunned me.  I had read about children with psoriasis in the NPF Bulletin — indeed, the Bulletin now runs a column devoted to kids with psoriasis….  My client said his daughter showed symptoms of psoriasis within a month of her birth and had been diagnosed psoriatic shortly thereafter.  “She goes for ultraviolet light treatments and tar baths twice a week,” my client said.  “In between we use the steroid creams.”

I asked what their doctor thought about systemic treatments and he said until she was older the doctors were reluctant to recommend this course.

“How does she handle it?” I asked my client.

“You know, Ed, it’s funny,” he said.  “I think it’s harder on her  mother and me than it is on her.  She’s in a private school that caters to kids with physical problems. Loren is bright, top of her class.  Her teachers tell us she’s very maternal towards her classmates.  The other night she told me she wanted a personal computer with a modem so she could go on line and ‘chat’ with her friends after school.  I asked her why she simply couldn’t call them on the phone.  She dismissed that as old fashioned.”

“Does she have any friends with psoriasis?” I asked.

“None at the school that I know of.  She’s made a couple of acquaintances at the clinic, but they live in other parts of town and there’s been no socializing.  Do you think that’s important?”

His question was very sincere and I could only shrug.  My psoriasis did not manifest until I was nearly forty.  For all practical purposes, I’d already lived a “normal” lifetime in shorts and sleeveless shirts.  My vitiligo made me “different” but not “repulsive.”  Though depressing as hell, it was easy for me, at the age of forty, to just say “those sleeveless days are over.  Now it’s long sleeve shirts, khaki pants and a broad-brimmed hat on the beach for me.”

On the plane back home to Kentucky I could not concentrate on my work, only on Loren’s room and imaginings of Loren herself.  Little Loren hasn’t met me, yet she’s humbled me.  She’s made me understand how very, really, lucky I am.

My mixed emotions to your email arose from the fact that I can identify with the ankle-to-wrist-clad stranger Hunter approached.  He may have been a man, like me, who began to flake later in life and did not yet possess the attitude about flaking that you are working diligently to impress on Hunter.  I’m afraid it’s one of those “old dogs” problems.

One of the things that has become apparent to me as I’ve received emails from so many flakers these past six years is that the best-adjusted have had it the longest — more specifically, they have grown up with it and had loved ones who taught them to cope.  That makes common sense, of course, and without all these emails I probably would have guessed that to be the case.  I’ll just say the proof’s in this pudding.  I fully suspect Hunter to grow up to be one of those best-adjusted.

Just as I have often thought of other ways I could have handled my Atlanta client — including offering to stay in town long enough to meet his daughter — your over-dressed stranger may have gone home with second thoughts, too.  Perhaps he was caught off guard or had never been confronted by a P-kid who wanted to talk about flaking.  Believe me, that could be a role reversal making the adult the completely disarmed, jabbering fool.

I rather suspect the man was in more need of counsel at that moment than your son, Laura.  He did not realize — most any grown flaker in his position might not realize — that the best therapy in the world would have been for him to stay put and relish however many moments were possible to share with the child, your son.

I sat on that plane returning home from Atlanta imagining what little Loren was like.  My world would be different today — even better, I’m sure — had I allowed myself that privilege.  And in retrospect I understand what I should have done had nothing to do with being a role-model for Loren, but in letting Loren be a lesson for me.

But now you have been a lesson for me.  For all of us.  Thanks.  Please write again, soon.  -Ed

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