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Maria’s story: Living with palmoplantar pustular psoriasis

Palmoplantar pustular psoriasis is a rare condition – but when it flares up, painful blisters on the feet or palms of the hands make it almost impossible to walk or do any other daily activities. Maria from Denmark knows what it’s like to live with pustular psoriasis, and now for the first time she shares her story of how she copes with this chronic condition and how she’s learnt to accept her body and herself.

How it began

I first had psoriasis when I was a child, but I wasn’t diagnosed then. I had a long pause with no flare-ups and then it started again six or seven years ago. My aunt has psoriasis on her scalp, so I believe it is inherited. I’ve also read that many patients with pustular psoriasis are either smokers or grew up with parents who smoked. But even after I stopped smoking, it just didn’t go away. My body has turned on a switch that I can’t turn off again. Besides that, I have type 2 diabetes, which came around the same time as the psoriasis. I just had to accept the fact that once psoriasis is triggered, it will not disappear.

Psoriasis and hobbies

There are quite a few hobbies that I’ve had to give up because of psoriasis. I love to dance, but now I can’t go out and dance any more. I also love to travel, and my mother will often ask, shouldn’t we go to New York or Rome or whatever – but I can’t do city trips because that requires a lot of walking, and chances are that I won’t be able to. I think it would be a hassle for anyone I travelled with, since they’d have to adjust their activities because of me. That makes me so sad.

When I do go on vacation, there are few places to choose from unfortunately. I need a naturally-occurring pool with seawater that doesn’t have steep stairs. Places like the Dead Sea are simply too expensive for me if I have to pay by myself. My mission now is to make a list of vacation spots that would be suitable and affordable for anyone living with the same condition as me.

Being a realist really helps

PsoHappy data shows that women feel more isolated and lonely because of psoriasis. I think that’s because most women are vainer than men, and focus so much on their public identity and their looks. Lately, I was counselling another woman with psoriasis that was having a really hard time with the condition. I told her something that I believe is empowering – you have psoriasis…but psoriasis doesn’t have YOU!

Most of the time, I don’t really care. I’m happy and I think most people with this condition could be happy too. The problem is that many people are trying so hard to return to who they were before psoriasis, instead of accepting their body as it is. Being a realist has helped me more than anything else. It’s important to get to know the new you and discover what you can do and then start over.

I have four grandchildren and one of them is old enough to understand my condition. He’s very protective of me when we go out. He’ll walk in front of me in the shopping mall, moving other people out of the way so they don’t hurt my feet. He shouldn’t be the one protecting me – it should be the other way around. But instinctively he feels that he should. It’s adorable and it makes me happy and sad at the same time. I choose to focus on happy!

Be who you are

Palmoplantar pustular psoriasis is so rare that there aren’t many resources for further research of the disease. People think that if they just find the right cream, everything will get back to normal – but if you keep having that illusion, you’ll never look for a solution that could actually work. We shouldn’t only keep hoping for a miracle.

In some ways, I’ve turned things around so that it’s a blessing – psoriasis has made me slow my life down a bit. I’ve learned to live with it and now I think of psoriasis as an unwanted companion – one that has nothing to do with you and is not who you are. Psoriasis is just something that you have to carry around with you for the rest of your life. You need to learn to love it and work with and around it. Just be who you are, because everyone else is already taken. That’s my advice for anyone out there living with psoriasis.

 

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