And other unfortunate places

25 01 2012

Let’s face it.  Most people don’t get the whole psoriasis thing until you explain the “and other unfortunate places” clause.

“sure, it’s bad dandruff, but that’s no big deal.

“It’s just a rash.  Try not to scratch it.”

They don’t get the connection to cancer, the fact that it’s an  autoimmune disorder that makes you vulnerable to infection, the whole stress management issues.  Nope.  But, if you ever need to make it clear the true affect psoriasis has on your life, just explain the “other unfortunate places” concept.

The notion that you do, regularly, get blood on your toilet paper from your anus–and not from anything you ate or otherwise chose to do.  The fact that sometimes you wonder what that rotting flesh smell is, and then you realize that it’s coming from your belly button.  And yes, even there, down in your “mommy daddy parts” it’s there, creeping it’s way towards your clitoris and scaring you everdaytime you think about it.

That’s guaranteed to get a face.

That’s guaranteed to make people understand that this affects every single decision I make.

I wear light colored clothing, not because I like it, but because I don’t like looking down only to find that my shoulders, my desk, the floor around me are covered in a light dusting of…well, me.

And yes, it does hurt.  Every time I sit down.

And no, my husband hasn’t touched me.  And I wouldn’t want him to.

And yes, if it creeps any further into my ear, I think I might lose my hearing.

Hairdressers have refused to cut my hair, even though I tell them it’s not contagious.

Doctors refuse to touch me without gloves, even though they know it’s not contagious.

And no, I can’t get life insurance right now.  I can’t pass the drug test.

It is related to cancer.  Nobody knows why, but they think it’s the drugs that you take to manage it.  But not managing it means that you could get all kinds of infections, and just plain sick, and itchy.

I feel like nobody hears me.  Nobody understands.  And yet, I also feel like I wouldn’t want them to.  Good grief, this is just a rash.  It’s not cancer.  and I don’t want people to know me only in terms of this.

I am accomplished, smart, funny,  actually quite pretty, and for the most part, a very happy blessed person with lots to be grateful for.

But on certain days, I just feel like I’m made up those unfortunate places.



One response

26 01 2012
Steven Severt

Great post! I know it is often easy to feel alone, and it seems like nobody understands what you’re going through. Even my wife often tells me that it doesn’t seem like a big deal, and that she doesn’t even notice the red patches, cracked & bloody skin, and scales all over my body. But I do. Mixed with the pain and the infections, and the embarrassed feeling that makes you want to wear turtle necks, stocking caps & jeans in 90 degree weather, psoriasis can sure take it’s toll on your mind, body and spirit. I feel you. At the very least, other psoriasis sufferers know what you are going through. I actually do not treat my psoriasis any more. Well, not with dermatologists and drugs anyway. I sometimes put on some coal tar or coconut oil to relieve some of the dryness and itchiness, but that’s about it. I sometimes get infections, but I’ve learned to live with them. I think I was getting worse infections while on meds, as while taking enbrel I ended up with a nasty case of merca (however that’s spelled). Well, good luck and God bless! I hope you find some relief!

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