Communications (October-November, 1997)

Suffering & Attitude
from Leslie Carver

You have no idea what a blessing it is to have found your site. My sister is 19 years old and has psoriasis. I don't know how her case relates to others, but in my eyes she is suffering greatly. I want to help her by knowing what to say and do for her. I hate the way people talk about her and make fun of her. It breaks my heart even more that I don't know what I can do to help.

Can you please point me in a direction? Any information you would be interested in sharing would be greatly appreciated. Thank you so much! -Leslie

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Ed's Reply:

Help your sister become and stay informed about psoriasis and, more particularly, about HER psoriasis. If she isn't already, encourage her to become a member of the National Psoriasis Foundation (see "Other Places"). If she has a sense of humor, introduce her to this web site. These are all baby steps.

The more important contribution you can make to your sister's quality of life is to help her achieve a sense of inner balance. At 19, if she's like most of us, she's see-sawing like crazy, bouncing off the walls, too young to be calmed by the inevitability of her own mortality, but too old to be naive. Acquiring a sense of inner balance is difficult enough for anybody, but has got to be more so for a young woman with psoriasis. It's something else she's got to juggle, to find a place for, to put into perspective.

"Inner balance" is a feeble way of implying what's important. Humans without mental handicaps have the innate capability to think about this concept. We can think about it in terms of "yesterday," "today," and "tomorrow." We can think about it in terms of "important to me," "important to you," and "important to them." We make decisions stemming from this concept all the time, though too often they are knee-jerk decisions. At 19, for most of us, the vast majority of our decisions are knee-jerk decisions—most of them definable as "important to me today."

Since psoriasis can be such a conspicuous disease it can, very easily, be "important to me today." Lord knows the company we keep often reinforces this. Check out the "Don't Say This" section here at Flake HQ and you'll see a whole list of ways people manage to reinforce the notion that our psoriasis is "important to me today."

Intellectually, we all know there are lots more things "important to me today" than my psoriasis. We also know that my psoriasis may not be important to you at all. And them? Most of "them" haven't a clue! ... Problem is, most of us don't blaze through our days fueled solely by intellect. I doubt I made a single "intellectual" decision when I was 19. What we DO do, when we're 19, is react and over-react. That's why we see-saw and bounce off the walls and struggle to find, but keep missing, that sense of inner balance. So, what can you do? You can be a source your sister reacts to which is NOT psoriasis-centered. You can be a magnet attracting reactions from her based on other important things. You can ensure your interactions with your sister are not based on compassion or shared misery over her suffering, but based on your affection for her, your belief in her potential, your enjoyment of all those qualities about her that have nothing to do with her skin.

The more time your sister spends in an environment where psoriasis is "not important to me today," the sooner she'll become capable of achieving her inner balance. Good luck! -Ed

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