Living with Psoriasis

This is not easy to write.  I’m sure everyone has something that they’d find difficult to write about.  Well, this is mine.

You see, I have a skin condition called psoriasis.  It’s an autoimmune disease where the immune system misfires and causes skin cells to divide around three times faster than normal.  The immune system thinks normal skin cells are some kind of pathogen that needs to be destroyed.  Unfortunately, it causes patches of red, flaky skin.  It’s a genetic disease that is much more common in Caucasians, especially for those of Scandinavian ancestry.  My maternal grandmother’s Norwegian, so that’s probably where I get it from.  There are several types of psoriasis, but mine is the regular plaque type.  There is no cure, but there are treatments that can improve the condition or even put it into remission.  However, relapses can happen often.  It’s a mystery what causes it, but it seems to be triggered by things like skin injury or stress.  It is not contagious, so don’t worry if you see someone with psoriasis.  You cannot catch it from them.

When I first noticed my psoriasis, it was 2000, and I had a patch of dry skin on my scalp that wouldn’t improve.  Being the Internet-savvy person I was at the time, I did a lot of research on skin conditions and came to the very incorrect conclusion that it was ringworm.  I visited a walk-in clinic to get it checked out, and the very arrogant doctor told me it was psoriasis.  He gave me a prescription for a topical corticosteroid cream while talking to me like I was a child who needed to be scolded.  I had no idea what his problem was.  So, I used the cream, but it was in my hair, so difficult to use.

Despite my attempts to use it, new patches of psoriasis appeared in different parts of my scalp, almost a mirror image of the original patch.  You see, psoriasis is often symmetrical, and affects both sides of the body in roughly the same location.  I bet you didn’t know that.

It grew and grew and grew, and eventually started showing on my ears and forehead.  That’s not common.  I was extremely self-conscious about it, and did my best to use my hair to cover it up. Sometimes it improved, and I was glad it was just a small spot on my forehead.

Fast-forward a few years, and it’s 2005.  I’m leaving for Japan.  I make sure I have a good supply of shampoo that’s made for people with psoriasis, because I don’t know if it’s sold in Japan.  Well, it’s not.  This means I get my mom and sister to send me some every so often from Canada.  There are two main types, one with coal tar, and the other with salicylic acid.  The coal tar type smells a lot and is not recommended for long-term use.  It can make the skin extremely sensitive to the sun.  Awful thing for Japanese summers.  It can also increase chances of cancer, as coal tar is a carcinogen.  Salicylic acid is much gentler, and it helps break up the dead skin cells, so I won’t have a snowstorm falling out of my hair.  That’s the type I use.  It manages it, but doesn’t improve it.

While in Japan, my psoriasis worsened.  It spread.  It’s now on my legs and a bit on my lower back.  I had a patch in my armpit, but it hasn’t returned in years.  My fingernails also occasionally get it.  It’s kind of annoying, because it pulls my fingernails from the skin, so it looks like they’re about to fall off.  Give it a couple months and they’re clear again.  It’s a cycle.  I even lost part of one of my big toenails to it, but now it’s normal again.

You see, this is the kind of thing I have to contend with.  Japan’s hot and humid summers are great for my psoriasis, though.  So is exercise.  The more I sweat, the better it seems to get.  The winters are dry, so I get dry skin often.  But it was like that in Canada, too.

Psychologically, this condition has given me many ups and downs.  I’ve been very self-conscious about it for a long time.  I try to hide it as much as possible.  I tried not to wear shorts, because I didn’t want it to show.  I get comments from time to time, such as, “Why don’t you use dandruff shampoo?” and “Are you under a lot of stress?”  Well, dandruff shampoo is the worst thing I could use.  It would aggravate my skin.  As for stress, sometimes, sure.  It was triggered by stress in the beginning, as it was shortly after both of my grandmothers had passed away, and I was unable to go to either of their funerals.  I often tried to deflect these questions.

But now, I’ve come to accept my condition.  That is why I’m writing this.  I feel more comfortable about saying this, although this is still quite a difficult thing for me to talk about in person with acquaintances.  However, I go out wearing shorts.  I don’t care if people can see it.  But I also don’t get comments about it.  People in Japan are polite like this, they don’t try to draw attention to anything about a person.  I’ve accepted that there’s not much I can do about my skin in Japan, other than get some sun (UV is actually therapeutic for psoriasis), but not too much, use moisturizer in winter, use my shampoo, and dress in loose clothes as much as possible.  I can’t stop it from happening.  I hope for remission, which is entirely possible, and is often sudden and unpredictable, but I won’t keep my hopes up.

What I ask is for people to understand that while I have this skin condition, it doesn’t affect my daily life.  It is also something I’m still not comfortable talking about with people who don’t understand it.  It’s not something that can be solved by using soap or dandruff shampoo.  It’s not something that can be solved with certain medicines, changed diet, or anything like that.  The problem with psoriasis is that it behaves differently for different people.  What works for one person may not work for another.  While advice is appreciated, I have tried many things that don’t work.  I haven’t found anything that’s effective for me, either.  But it seems exercise eases it.

For those of you who have psoriasis, and are having difficulty with dealing with it, you’re not alone.  Two to four percent of the population has psoriasis.  That’s between around 140 to 280 million people around the world.  That’s a lot.  But if you need someone to talk to, go to my about page and send me a message.  You can also read this flash fiction I wrote yesterday about the subject.

I hope everyone can come away from this blog post with better understanding.  Thanks for reading.

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13 thoughts on “Living with Psoriasis”

  1. I’m so lucky mine was limited to elbows and knees :$ It was mild and started when I was 6. They actually have immunomodulators for psoriasis here in America. It comes complete with it’s own risks though because it is modulating your immune system. It’s more commonly used in psoriatic arthritis. If it was on my face I could imagine the social stigma would be much worse 😦 Mine went away when we moved to a very dry and hot state. My only relapse has been after my second hip surgery. Sorry about the arrogant doctor. Unfortunately, there are so many like that :/ I haven’t looked into it for psoriasis, but I found several private forums on Facebook for my hip issues and Ehlers Danlos. It does help to know you aren’t alone. Thank you for having the courage to speak up about it 🙂 And yeah, I get people coming up with crazy remedies for my hip and Ehlers Danlos. It’s generally well intentioned, but pretty annoying. I even had someone suggest I do yoga which is the absolute worst thing someone with defective collagen should be doing D:

    1. Hot and dry was better for you? Dry makes mine worse. It’s so unpredictable how psoriasis behaves for different people.

      I’ve read a bit on your blog about Ehlers Danlos. I can imagine yoga would be terrible for it.

      Thanks for commenting!

  2. I get it between my fingers sometimes. I’ve tried keeping a diary of what foods I’ve been eating, but haven’t come up with any common denominators. I just use cortisone cream and it goes away for a day, then returns. Wash, rinse, repeat. I think in my case it’s stress more than anything. When I was breaking up with my ex, I got it only around the ring he gave me… Go figure. They say your body changes every seven years. Were you in or close to a seventh year of age when it started? (i.e. 14, 21, etc.) Mine almost completely disappeared when I turned 42, so maybe yours will too when you reach a number divisible by seven again.
    Best of luck with it.

  3. Everyone’s got their something. Something great and something they hate. Something that they feel insecure about…

    I have shared mine with only one other person, so huge kudos to you for this.

    1. Thanks. I’d been planning on writing about this for several months, but getting the nerve to actually do it took some time. After I posted it, I felt free. It’s out, very public, and I’m not going to try to hide it anymore. It’s something quite visible, so I’d rather be able to explain it than give some excuse.

  4. Jay Dee, I’m so glad you shared your experiences with this. It’s so hard to talk about personal things, so thanks for being brave and speaking out! I experienced psoriasis and a bleeding scalp when I was a teenager and had to use the tar shampoo (ick) – luckily it was hidden by my hair. It seemed to be related to hormones (or teenage stress), because it went away for a long time, and when it surfaces occasionally it’s relatively minor. I do still get dry patches on my elbows, though, and when I lean on my elbows a lot they start going red and flaky. I keep waiting for people to ask what’s wrong with my elbows now that it’s short-sleeve weather, but so far it hasn’t happened.

    It’s interesting how a lot of things get triggered by stress. I had a lot of my hair fall out during a stressful time (losing my job) and when I’m struggling with stress my one eye starts twitching a lot which can last on and off for a few days. I hate it when that happens because it’s so noticeable. It’s not nice having a “tell” for things that you’d rather keep to yourself.

    Thanks again for posting!

    1. Thanks for the comment. Believe it or not, my psoriasis has been improving a little in the past couple weeks. I have the sun to thank for that. But when summer is over, it’ll be back.

      One reason I wanted to tell people about this is that I was tired of having to explain it, and since it’s out and public, I feel like it’s easier to tell people about it.

    1. Thanks for the comment. It is nice not to have anyone focusing on my psoriasis here in Japan. But we’ll be moving to Canada next year. And I’m going to get a recommendation for a dermatologist to see if I can undergo UV treatments. Would be nice to force this into remission.

        1. Thanks. I was supposed to see a dermatologist just before leaving for Japan, but there was no chance. The earliest appointment was for when I was already in Japan.

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