I have psoriasis. I've had it since I was about 15, and it is a big pain in the ass.
Actually, it's not painful at all, it's itchy, unsightly and inconvenient. The first two are self-explanatory; having big red scaly flaky patches of skin due to a believes -to -be -screw -up in one's immune system leading to the overproduction of skin cells isn't so great. It's also inconvenient because in my desire to rid myself of itchiness and unsightliness I have to undergo treatments of varying levels of effectiveness that take up my time--applying creams twice a day over most of my body, and right now, undergoing phototherapy 3 times a week (it takes about 10 minutes, but I have to get there etc).
Inconvenience also arises whenever I need to buy clothes for the skin-baring months--I'm very happy 3/4 sleeves are big this year, they hide my elbows. Or when your kids want to go to the local pool and you're not up for being all spotty. We won't speak about those fancy occasions when I might need to wear a dress or bare my arms. Inconvenient.
Those complaints aside, it's not so bad in the spectrum of immune-system diseases or other chronic conditions. It doesn't cause pain, disability, mental illness or general unwellness. It won't debilitate or kill me. I do have a higher risk of developing a form of rheumatiod arthitis, and my kids might develop it (which would suck), but that's about it. It's itchy and ugly and I've learned to live with it.
So, when I discovered that America's Next Top Model Winner CariDee English has become the spokesperson for the National Psoriasis foundation, I had mixed feelings.
I *get* all the talk about awareness that we hear whenever any celebrity is associated with a cause or disease. I *get* that awareness may lead to more research money, less stigmatization, a greater understanding of why that person might be wearing long pants and a long sleeved shirt in the summer, and all that the promise of awareness might bring.
But I dislike platitudes like these: "Psoriasis awareness is very important to me. I want other with the disease to know they are not alone. I want to inspire them to live their dreams."
Live my dreams? Inspire me? Huh? Bleh.
My dreams haven't been tied to how I look. It may be inconvenient, but psoriasis doesn't slow me down.
Or "She spent years gathering information and trying various treatments. Her psoriasis persisted but so did CariDee. She maintained an optimistic outlook and a vision of becoming a model. After a hard-won acceptance of the disease, and visits to three different dermatologists to find a treatment that works for her, she is living her dream."
Hard work, persistence, struggle, determination. The usual triumph over tragedy story. She changed from ugly duckling to beautiful swan or rather Top Model swan.
Does CariDee as the "face" of psoriasis, send a message of hope to sufferers of this condition or raise the bar a whole hell of a lot?
While I don't want to dismiss the emotional toll of psoriasis, I do want to state that having a beautiful face attached to this cause again privileges beauty as the most important thing. The new (super expensive) biologics that CariDee English uses to control her psoriasis have both mild and nasty side effects.
Is this another case of suffering to be beautiful? What happens to her if the drugs stop working? Does the Psoriasis foundation still want her as a spokesperson?
And for those of us who choose not to do "everything that we can" to control our psoriasis? Will we be slackers? The ugly and unfortunate? (the drugs she is taking cost about $2000 a month and will only be paid for by insurance after you've tried everything else). More stigmatized for not using the options available? A quick surf on CariDee shows that a lot of people want to know what she's using and how they can get it so they can look as good as her. But maybe that's the point. I bet Raptiva is mighty happy that she's around.
Me? I'm not sure I want to trade the good health I have now with clear skin.
Or feel like I need to "look good to feel better".
The thing about a disease that affects your physical appearance is that it's only a problem if the person who has it thinks its a problem. Most of the time, I don't really think much about it. However, in the world we live in, how one looks is pretty important, especially for women. As someone who tries to fight against the norms of physical beauty attached to women (even when I feel like I fail miserably) having a spokesperson who is beautiful as her profession just doesn't sit right with me.
I'm not sure I've articulated this fully. But I've been mulling it over for about a week now and wanted to write about it.