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10 Things You Need to Know About My Rare Sun Allergy

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When I was in my early teens I started to notice that I hated going outside. I didn’t want to work in the garden. I didn’t want to swim. I didn’t want to go on vacation.

My freshman year of high school I realized I got a rash whenever I was in the sun. I decided this must be normal and ignored it. I used my SPF 30 or 50 or the highest thing we happened to have in the house. And I got the rash and I didn’t feel great and I kept quiet.

People in my family don’t get sunburns.

Heck — I’ve never gotten a sunburn.

But I have a skin condition called solar urticaria where I react to UVA rays almost immediately. This includes sunlight — even when filtered through untreated glass — and fluorescence. Within a few minutes I’ll start to get a rash. This can quickly progress to flu-like symptoms: chills, nausea, body aches, migraine headaches, and a burning sensation that lasts for days.

So here are 10 things you really need to know about my sun allergy:

1) Don’t ignore my symptoms. I wear a medical ID at all times, not necessarily because I think EMS might need it, but because no one believes me when I tell them I need to get out of the sun. So, I decided to engrave it on a piece of metal.

2) Don’t suggest treatments unless I ask and don’t contradict my treatment plan. I use two different high SPF sunscreens, don’t tell me how you feel about the chemicals they contain. Don’t tell me that some supplement will change it all forever. I’ve talked to my doctor. I’ve got it under control.

3) Don’t make jokes. I’m allowed to laugh about it. You’re not.

4) Don’t say it’s not real or assume it’s a sunburn. It is real and it’s not a sunburn.

5) Don’t assume you know how my symptoms work. One of my least favorite things is when people say that things will be “fine” because of slight cloud cover, or that “one tree over there,” or because that dress has short sleeves and comes to my knees.

6) Don’t say it’s inconvenient. You have to deal with this for a few hours at a time without any physical effects. Think how inconvenient this is for me. If I have to be outside for five minutes in early May I might be unwell for two days. I almost passed out at a fire drill at work after seven minutes of sun exposure.

7) Don’t assume that I have to compromise my personal style to keep my skin covered. Maxi dresses are a thing. So are scarves. So are Panama hats. I wear heels every day; snow doesn’t prevent it. My parasols are some of my favorite possessions. Under Armor has a line of hot weather running and hiking gear that’s the greatest thing ever.

8) Don’t assume I can’t go to the beach or do things outside. I just need to take some precautions. Beach umbrellas are the best. My swim tights (thank you Lands’ End!) are amazing. My sunscreen works relatively well. I love hiking. I love the water. I just have to think a little harder before I go.

9) Don’t assume I’m not an active, capable person. I’m a distance runner. I hike. I do Pilates and yoga on a daily basis. I was a serious modern dancer all the way through college and ran our swing dance club. My record is 12 fouettes. I can run a 9-minute mile and do 400 crunches. I’ve got defined abs, 19-inch quads, small but toned biceps, and serious muscle definition in my upper back. Yes, technically I have a chronic illness, but that doesn’t mean I’m not an active, physically fit person.

10) Don’t be afraid to ask questions or check in. You have no idea how happy it makes me when someone actually sits down and tries to understand.

Originally published: March 8, 2018
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