Tuesday, January 29, 2013

Living in the Shoes of a Person with Psoriasis

I don't know why I've never talked about this on my blog. I've told myself that I am going to start writing more from the heart, about myself, instead of just always showing pictures, although I am sure that's why a few of you visit this blog, at all. So, I am sorry if you don't enjoy all the writing!
For those of you who don't know me, I have psoriasis. I have had it on the back of my scalp for as long as I can remember. Psoriasis runs in my family, and all of us who suffer from it have it on different areas of our body. Mine has only been on my scalp and has never spread, although the patch has gotten larger as I've been pregnant and gotten older.
If you don't know what psoriasis is, psoriasis is a non-contagious auto-immune skin condition which causes the skin to consistantly make new skin cells, resulting in a buildup of itchy, flaky scales. Learn more about it here. Imagine when you cut yourself. When that happens, your skin begins to regrow new skin in the affected area, which results in a scab. Eventually, that scab becomes itchy, then will fall off and voila. You have new skin. Well, imagine having an itchy, scaly, flaky scab over all of your body, constantly, for the rest of your life. That's psoriasis. There is no cure at this point, although there are many medications and treatments that come sometimes help, even though they are incredibly expensive and require treatment from a doctor.
In my particular case, my patch has always been on the back of my head. As a kid, I was scratch my head, all the time. It's like I had dandruff, but didn't. I couldn't wear my hair in a ponytail, ever, because not only would people see the psoriasis on the back of my neck, but I was constantly flaking. It became a habit of mine to always brush off my shoulders, so people couldn't see the flakes; wearing black was especially embarassing. No one ever teased me for it, but I don't know if anyone really knew. I hated going to get my hair cut, because I knew the person cutting my hair would see it and be grossed out. I remember being in a car, with my sisters in the backseat and them telling me, "stop scratching!" It was a habit that I didn't even notice, but one that I was doing constantly.
Growing up, I kind of learned to just live with it, although, it would sometimes drive me completely nuts. I would wake up, and still do, to constant itching, and no amount scratching ever gave me relief. Stress is a trigger for it, as well as changes in your hormones, such as pregnancy. So that was an especially bad time. There are times that I get up, and my husband says, "Jenna, your back!" because it's almost completely white. Now, I've lived with the itching for so long, that it's not just second nature, but it's also an addiction. There's been times I've scratched so long, so hard, that I've made myself bleed. Not good.
It's terribly annoying and aggravating, knowing that it will be something you treat forever, and that nothing you will use will work for very long. Not only is psoriasis incurable, but it also builds immunity to medications, so something that has worked for a month or so, will just stop working. I guess I've just learned to deal with it over the years. But it's something I am always cognisant of. It's still embarassing, but now I am much more likely to tell people about it, as opposed to keeping it a secret. I suppose people could call me "lucky," in that it's not all over my body. There are some people who have patches all over their body, everywhere, and luckily, mine has never spread like that. But I do think about Avery, since it runs in our family. I hope that is something she never has to experience.
Living with psoriasis is draining, both emotionally and physically. I often get headaches from the scratching. The embarassment and constant thought given to "Am I flaky?" "Can people hear me scratch?" is hard to live with. I have used various medications in the past, but they are sometimes so tedious, stinky, oily and uncomfortable that I just don't even bother doing them at all, especially because they require use at least twice a day. Since my skin is often irritated, these treatments can also be very painful, buring my skin, inducing tears. I learned the hard way how not to apply hair dye, as that was especially painful. Even running water of my scalp, while theraputic, hurts.
There are many worse things in the world to have, much more painful ailments to suffer from. The severity of my case could be much worse, but it doesn't make it easier. It is usually referred to as the "Heartbreak of Psoriasis," with good reason.


Kaydi said...

I have it too and in the same spot. I totally understand.

Jenna @ Sharing My Jennarocity said...

I didn't know that, Kaydi! You know how I feel then. Wow!