Thursday, January 15, 2009

But you don't look sick

A few days ago I reposted "The Spoon Theory." But, when I tried to link to the author's site, for some reason it wouldn't work. Well, Ana tried it and she resent me the link. I'm sure many of you would find this site interesting so here it is: http://www.butyoudontlooksick.com/ .

Not always looking sick is a problem for many of us with Hermansky-Pudlak Syndrome. But, currently I'm tossing around what I see as another problem in my head. I'm not sure I'm ready to wax philosophical about it - just pondering.

As people with albinism, we generally know we've got albinism long before we put together the fact that we've got HPS. That isn't always the case, but usually. That means that often we find ourselves in other spheres of influence as we develop our coping skills that are unique to us. Many of us find ourselves involved in the albinism community where the emphasis is typically of psycho/social aspects of albinism. To regard it as a disease is offensive to many.

Or, we find ourselves in the low vision/blindness world where, hopefully, the emphasis is placed on obtaining good alternative technique skills and overcoming to do anything.

But HPS is a bit different than both of these things. What I'm tossing around in my mind is how the coping skills we learn in these settings translate when we find ourselves with chronic health issues? Are they helpful or hurtful or both? Maybe more on this later.

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