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Awareness and Super Models and a funny feeling I can't describe...

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."

Bleh.

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. 

Any thoughts?

Comments

I think you've articuated it really well.

It always seems to be the beautiful +/or cutesy that are picked to be the 'face' of a condition. Not anyone representative of the majority , often neither (like most of us).

i want to see more pictures in the world of different looking people, like those I enjoy seeing around me.

And that means Eliza Dushku NOT getting on the botox bandwagon - just don't get me started on how that ruins my pleasure in seeing people! I don't want everyone I see to be a plastic, unwrinkled identikit doll!

Thanks.

(Sorry, hijacked with the Eliza comment which I now see made no sense, I was just upset seeing the unmoving face of an actress I quite like last night, and it seems to me part of the same 'norms of physical beauty' (norms which are becoming ever more narrow) to me.

That is a complex topic. I understand that the human preference for certain kinds of facial features (conforming to conventional beauty) is biological as well as cultural (this may not be true, but some Science Channel program pops to mind). If there is a non-culturally based predisposition to be drawn to certain looks, wouldn't it be smart of an organization to exploit that to get the non-sufferers to take notice? On the other hand, you express the point that the vision of non-itchy loveliness doesn't make you feel supported.

Complicated.

Great post Steph. I think you've described it well. It's part of the push toward standardising the way we look, IMO, but it's interesting to read the way you feel about these 'face' celebrities. I personally hate the way that 'diseases' have to compete for public sympathy: I have fits about the high profile of breast cancer fundraising compared with ovarian cancer, for example. Much easier to get money for young sexy women than for post-menopausal women.

Yes, I agree. I think you have articulated it perfectly.
Shallow beauty and expensive treatments are absurd for most of us.
So here is a bit of info from the alternative community.... (which if you have already tried and it didn't help, please feel totally free to ignore and discount - )
Pure Omega 3 fish oil has been known to help a great deal. Most people would need about 12,000mg per day in 3-4 divided doses. It takes about a month to help. Costco sells it - it's realtively cheap, and available.
All that being said, my overall view is that each of us deserves to enjoy our lives in a sweet, relaxed way... and if this condition has caused limitation in your life, then you deserve some release from it.
So go for it - keep on plugging away at treatments until one works.
I wish you all the best.

I guess it's all relative. My younger sister, who is 42, has been diagnosed with ALS (Lou Gehrig's disease). It took her 6 weeks to get an appointment at the only ALS clinic in Toronto (Sunnybrook). The day before her appointment, they called to say the doctor she was to see was sick, that her appointment was cancelled, and that she would be rescheduled for the next available one, which was four weeks after that. When she complained, the nurse said they were unfunded and understaffed, and that the ALS clinic was almost closed down recently due to a lack of funds.
She feels that the medical system has let her down and she is frustrated. But I guess it is a terminal disease, no matter which way you look at it, and not too may people are interested in contributing money to a cause where there is 100% mortality and the life span is rather short (70% mortality within 3 years of diagnosis).
If you can get a "celebrity" to publicize an illness and raise awareness, some would say go for it, if it's going to help raise money and encourage pharmaceutical companies to spend research money on cures. Yes, it is unfortunate that people pay more attention when it's some kind of "well-known person" who talks about an illness, but I guess it's better than being left in total obscurity, even if it's appealing to people for the wrong reasons.

If you want a spokesperson for quadriplegic people, you get a celebrity who had a horrible accident but is out doing fundraising and active and stuff, so you can show how much they have overcome. But you don't get the quadriplegic guy who's a vegetable in a hospital bed. If you want a spokesman for land mine awareness, you get someone like Heather Mills McCartney who has a prosthesis and gets around just fine. But you don't get an under-educated ex-soldier from a third world country who lost all his limbs and half his face to a land mine.

But if you've got a disease that doesn't actually debilitate in any way like psoriasis, then the only thing it leaves you with is to have someone not afraid to bare their skin, and since the general public probably doesn't want to see someone with severe psoriasis baring their skin anyway, you're left with a model as the best option for a spokesperson. I imagine that a commercial with a normal mother of 4 talking about how people look at her when she's wearing a bathing suit wouldn't be a very attractive cause to the rest of the world.

Marketing people are looking for the right balance of sympathy with attractiveness. Plenty of sympathy, but no attractiveness just makes people go "Oh, that's so sad" and then move on with their daily lives. Without the attractiveness, there is no drive forward.

Miriam-

But aren't there a lot of charitable groups and causes which move forward strictly on the basis how unattractive the problem is? Pictures of starving children, complete with distended bellies and elbows and wrists larger than their forearms, are not attractive, and yet they've been used to raise money just fine for years. Anti-choicers regularly campaign on my campus with giant signs depicting bloody fetuses and I know it works for a lot of people (hell, it worked for the people shilling in front of the display) even if it rather disgusts me, what with all the factual inaccuracies they present- that's a whole other discussion, though.

Paethos is supposebly one of, if not the, most powerful appeals you can make, and whatever beautiful people may inspire in modern society, they don't pull the heartstrings the way suffering does. Might not the public identify better with a normal mother of four with bad skin than some beauty queen who lives on a media pedastel? An average, everyday sort of person comes across as genuine, as personal, as a mother or sister or friend- and that's marketing power right there.

I think my issue with the beauty queen spokesperson is how it seems to make the issue more shallow. If you want people to care about the disease, it helps if they know what it actually looks like, as versus looking at someone with no visible signs and going "Well, she says it's bad, but look at her: she doesn't need my support."

Even outside of causes and charaties, politicians, big companies and their CEOs and other such alien entities invest an overwhelming amount of time and money into convincing the public that said entities are "just your normal average joes", and when they step outside of that image they're often attacked. There's got to be money in there somewhere.

I hear you! I have Keratosis Pilaris- an unsightly 'rash' of raised red bumps on my upper arms and legs, which is always worse in the winter. For years I hid my arms, since everyone and their dog would ask me, "Ew, is that contagious?!" Nice. The only treatment that worked for me was a massive sunburn in Mexico- the first time I've had smooth arms in 40 years. As for the beauty queen , we all have bigger crosses to bear. Who knows what lurks beneath?

My mom has been diagnosed with psoriasis - something she developped after being caught in Mtl in a shooting (bank robbery) the stress triggered the whole thing but she moved back her village near Quebec City and it slowed down a bit.. However, I have seen her in winter - she is 70 yr-old - put cream twice a day and wrapping herself in saranwrap (!!) in order to bring warm and humidity.. She is followed by a doctor, but she is a proud women and does feel miserable (she also has vitiligo on her hands and upper arms).. If she is stressed it is worst.. The fact is that at night - when not in her house where she can wrap herself (can't help finding it funny somewhat) she is scratching herself in her sleep... anyway besides, she walks 6km per day when the weather permits and she is in good health and the way the genes are going she will live til 90.. So we all have our toll I guess.. Courage !

Corvus: I think you found that thing that was bugging me about this spokesmodel. She doesn't look bad. At all. In fact she's quite beautiful. She has the one thing most people with psoriasis don't have.

In fact, on some message boards, people wonder if she really has the disease. And they dislike how she makes treating it look easy: "Just pop a needle in your arm once a week and be beautiful like me."

I'm sure she's suffered the same things the rest of us have (gym class with a short short uniform that I was excused from wearing was a nightmare in highschool) but somehow that doesn't quite come across.

And, all this is about an appearance-related condition. They suck because appearance does matter (and I've had that contagious crack too--fuck people are rude), but, that's exactly the problem. In North America, those diseases seem to matter more than starving children, TB, HIV, malaria, poverty etc. etc. etc.

I am not a fellow sufferer...
but I do think it's awkward to have a person whose job is beauty to be a spokesperson.
I'd rather see a person who is successful, famous, etc.... whose psoriasis is NOT reliably under control, so that we can see that you can be normal and happy even if your skin cream doesn't always work... and so that we can learn that flaky skin isn't contagious, evil, etc...

Wow. I had so many things I wanted to say, but after reading all the excellent comments, I don't remember what they were. Very engaging post (obviously). I agree that there is something "off" about having a model as the spokesperson for psoriasis. That's like having 15-year-olds advertising wrinkle cream.

De-lurking to thank you for a great post about how we are hit over the head with "beauty above all" so so much. I get so sick of it and so discouraged that it is taken for granted and hardly discussed, at least within my radar!

I think you've hit the nail on the head. My mom has psoriasis. It looks horrible around her knees and elbows, but it didn't stop her from wearing shorts. She just decided at some point that the itchiness and discomfort were not going to get in her way. I don't think she treats it other than some lotion. For a condition, like psoriasis, where one of the main effects is on the surface (aka skin), I would rather have someone who is physically capabale, an athlete, a doctor or even a news anchor. Someone for whom being pretty isn't the most important part of their job.

My husband has psoriasis and has developed rheumatoid arthritis in recent years. I've had to watch him deal with the ickiness of the psoriasis -- wrapping, lotions, coal-tar soaks, phototherapy, etc. -- for over 30 years, and now my heart aches to see how the arthritis pains him and keeps him from doing what he wants. I have no great insights into this discussion, although having a model as a spokesperson seems shallow, to say the least. You and others here who point out that in the great scheme of things psoriasis is a pretty minor afflication compared with ALS. cancer, land mines, and starvation are totally right.

I think disease causes and/or charities have become lucrative businesses with excellent tax relief incentives without really doing anything for those they are supposed to be helping. When I give to a cause, it's to help locally. I'm very cynical when it comes to charities.

I know it's hard for some charities to get national attention for monies, especially since governments have been withdrawing support. Guess charities need 'look at me' spoke people, pink boobs and red dresses. It's all in the marketing.

If you're comfortable and confident in your own skin (no pun intended) then who cares what you look like? I find most people who are obsessed with the way they look don't have any depth, empty shells. You only have to look at our PM as an example. I do like poking fun at him but for his looks? No, not the way to win a battle. Although, I think if he didn't let the jibs get to him he wouldn't get picked on so much.

Psoriasis hasn't slowed you down and you've got a little bit before the arthritis starts to set. Walking really helps and so does knitting. In the grand scheme of things I'd say you were doing and looking pretty damn good. It's all in the attitude which you've got lots of.

Do you think they'll start a charity for cosmetic treatments gone bad? A charity for headlights pointing in the opposite direction? Botox detox?

Bravo to you~ At what price beauty? It's just a bit ridiculous for her to be promoting (and don't you wonder if she's being "sponsored" somehow?) "beautiful" skin when her health may be affected. A lot of good that skin will do her in the hospital or worse.

I get eczma, mostly on my legs. It used to be pretty bad, but these days it's more at the annoying level. I mean, it sure would improve my quality of life if I didn't have to think about it, but even I, with my pampered first world life, have bigger things to complain about.

Still, I get bad shaving rash, and my legs are never going to be smooth and 'beautiful'. Last summer was teh first one where I threw caution to the winds and jsut wore what I liked - skirts, dresses, shorts, whatever! This was partly because it is not as bad as it has been, but also because I cared a lot less.

I did get a few comments along the lines of 'what happened to your legs!' But only from 'pretty girls'. Frankly, nobody is going to suggest that my legs are either all I have to offer, or the best I have to offer. This is a good thing (for me).

I think these 'awareness' things are a little weird. I mean to say, how many things am I supposed to be aware of. not only do I have to be PC about thigns like respecting indiginous people and new australians, about gender adn disability and disadvantage. I also have to buy pink appliances and be aware of hepatitis and know about meningacocle. (clearly I'm not - I can't even be bothered checking the spelling)

Frankly, it's exhausting. And I don't really need another 'pretty girl' telling me what to be aware of. Sorry, pretty girls. I know you're not all light-weights. Just the ones being paid to be a 'face'.

(PS, that wrap is AWESOME)

I was recently diagnosed with rosacea (red face, pustules - what a lovely word!, etc.) My face looked like crap for most of last year, but that didn't affect how I lived. But I was really surprised to read on some of the rosacea sites that it is common for people who have rosacea to have extremely low-self esteem.

My face is NOT me, it is not who I am, it just how I look. With treatment, it usually looks better than it did last year, but I feel so badly for people who define themselves by how they look and not who they are or what they do.

Do I wish it would go away? Yes. Do I hope my children don't get it ? Yes. Will I change my life because of it? No.

I had a psoriasis diagnosis a couple of years ago--spent the first year or so with steroid creams, then, worried about skin thinning, changed to liberal applications of vaseline twice a day--which has been my moisturizer of choice for quite a few years now. It's a mild case, but I certainly look forward to summer weather when sunshine seems to help. And since there's no known cure, it's really whatever works! Vitiligo is also present, but not a huge issue. I don't know how I would have dealt with this when I was much younger...

This was a great post... in fact, it got me to comment, which I've never done before now. I also had a lot to say, but lost my train of thought after reading the comments.

One thing, though... I find it hard to take things to heart that a beautiful person says. Ok, well, not ALWAYS - that sounded wrong - but in the area of physical difficulties. I'm sure it's easier to have psoriasis on your arms and legs, etc, when you have a beautiful face. I think I'd much rather listen to an average looking person as the spokesperson for something physical.

I have adult acne, and yes, it's irritating, because I can never seem to look "my best", but I never let it bother me. As Leslie mentioned above me, my face is NOT me, and if people are going to make some snap judgement of me just because of my skin, then I didn't want to know them, anyhow.

I know I just got completely off topic. Sorry. Great post, though! :)

I hear an ad on the radio for some snake oil to treat " ... the EMBARRASMENT of acne! ... " -- and I think, What's so embarrasing? It's annoying, sure, but embarrassing? Why should I be embarrassed about my skin color, foot size, or anything else I can't change?

I don't have eczema, but I get an excruciating rash when I shave my legs. Therefore ... I don't shave, or wax, or depilate. A few rudesbies (rudesbys?) cast sideways looks or a nasty comment once in a while ... I just ask 'em what THEIR problem is. I clearly have no problem. :-)

In any case ... yeah. Beauty only goes skin deep, and anyone put off by my non-beauty is somebody I can live without. I don't have, want, or need a spokesperson to sell me snake oil.

I'd like to second Leslie's comment, as someone else with rosacea. Before I got treatment, mine was bad enough that I couldn't really cover it up with makeup, but reading through some of the pamphlets I twitched every time they talked about "suffering" from rosacea. The worst cases can result in permanent scarring and I won't blame anyone with that kind of case having self-esteem problems. For myself, however, calling myself a "sufferer" seems wildly inappropriate. Even more importantly I won't use the term on myself because my self-image isn't tied to my appearance, and there are worse things in the world to deal with than the way I look.

My Dad has an "ALS-like" condition, which adds any extra reinforcement I needed. Seeing what he has to deal with, my occasional breakout and burning cheeks is nothing I would want to have a celebrity spokesperson for.

I'd like to second Leslie's comment, as someone else with rosacea. Before I got treatment, mine was bad enough that I couldn't really cover it up with makeup, but reading through some of the pamphlets I twitched every time they talked about "suffering" from rosacea. The worst cases can result in permanent scarring and I won't blame anyone with that kind of case having self-esteem problems. For myself, however, calling myself a "sufferer" seems wildly inappropriate. Even more importantly I won't use the term on myself because my self-image isn't tied to my appearance, and there are worse things in the world to deal with than the way I look.

My Dad has an "ALS-like" condition, which adds any extra reinforcement I needed. Seeing what he has to deal with, my occasional breakout and burning cheeks is nothing I would want to have a celebrity spokesperson for.

I must add that my daughter not only has psoriasis but psoriatic arthritis. This is extremely debilitating and certainly not merely about being embarassed by scaly patches. I have seen her at 16 where she went from playing tennis one day to being unable to get out of bed the next.
I fought her going on the heavy duty meds but as a result she now has permanent joint damage. I worry everyday that she will not be able to have health insurance and lose her benefits and eventually wind up in a wheel chair.
If your psoriasis is limited to the breakouts and patches this is far different from what the horribly debilitating effects of the disease can be.
There was a British miniseries and then a movie redone in US recently I think called the "Singing Detective" which illustrates the agonizingly painful effects of this disease.
Sorry to go on and on, have been lurking on your blog many years, but this problem can be much more serious than most peple realize and it's not just about shallow beauty.
As far as the "celebrity spokesmodels" I did get some feeling of connection reading about Kathleen Turner's struggles with this disease. I think it just helps decrease the isolation when you think you're the only one going through this.

I just found this post (sorry behind on my blogreading) and what you say is absolutley true. Those creams CAridee uses are the "big guns" and should not be used lightly. having said that, I am a pharmacist and have seen people with psoriasis so bad that their skin was cracking open. However, in 18 years opf practice I have seen 2 people like that. They would probably qualify for the raptiva-like creams. I find it hard to believe that people with mild to moderate iossues should use such strong medications. Cannon and fly, as they say! You are exactly right about this particular campaign focussing on beauty rather than health.

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