Living with PLE

Summer is coming and its the best time of the year for many!!

But for some of us living with PLE, it can be a fun yet difficult time. I love the sunshine and fresh air as much as anyone else. I feel less depressed. I LOVE not bundling up in a ton of layers and boots just to go outside. I am truly happy to see spring time!

Yet three years ago, I started getting rashes and very ill by the end of the day when I went outside. It wasn’t a burn, it was like being stung by a bunch of bees. It was painful and itchy. And I felt like I had the flu. I would get chills, a sore throat and feel hot all at the same time.

I have dealt with an autoimmune disease since 12. Yet this was different. It took a while to get into a specialist. The first year, I didn’t do anything (I’m not a huge fan of doctors!). And then it took a long time to get an appointment. Then a biopsy. The diagnosis was polymorphic light eruption. Which means my immune system is reacting to the UV from the sun. I thought I was going crazy! I thought it was stress. I was using sunscreen and wearing clothes to cover up. I sat in the shade, but I still would get sick.

Just 10-15 minutes outside, and I start breaking out. There is no relief. Sitting in the shade is helpful, but it doesn’t eliminate the rash or symptoms of PLE. It still happens. Yes, sometimes I sit outside anyway (in the shade). And hope the symptoms won’t be as severe.

Yet as summer comes, people are talking about family picnics, getting together with friends in the outdoors and as business owner, network meetings are moved outside. And sometimes it feels like you’re not a part of it. Sometimes I wonder if anyone believes me. This is why I want to share this with anyone suffering from PLE. And if you THINK you are, you should go see a doctor!

There is no cure, and the treatment is too dangerous to use all the time.

But its hard to know that the summer may bring many invitations that I have to turn down. That sometimes I will go outside and try, and I will get sick. And sometimes family and friends won’t understand. Even those that have seen the severe rash by nighttime. Because when its not your body, its hard to understand. Its hard to understand what it feels like to crawl into bed with chills, a sore throat and headache because you went outside.

So I want to reach out to anyone suffering from PLE. I want you to know you’re not alone! Because sometimes it feels that way. Enjoy your summer but know its OK to say no, I can’t go outside this time. I don’t like to share especially personal things on my blog but knowing how isolating this can leave you, I wanted to write about my experiences for others living with this too.

Happy Spring!!