10 Things You Need to Know About My Rare Sun Allergy


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.


Find this story helpful? Share it with someone you care about.


Related to Solar Urticaria

Smartphone with paper list of reminders.

How My Smartphone Helps Me Thrive With ADHD

If you frequent social media, you will most likely have seen multiple posts and articles about the potential ills of smartphones and their negative impact upon the lives of their users. Though these articles often make valid points, I have some points of my own to add to this discussion. As a woman with the [...]
medicines in blister packaging and brown glasses in backlight

A Study Found That Opioids Don't Work Best for Some Types of Chronic Pain. Here's What Patients Think.

A new study claims to offer evidence that opioids don’t work better than non-opioid pain medication for some types of chronic pain, and patients have a lot to say about it. The study, published yesterday in the Journal of the American Medical Association, looked at 234 patients from Veterans Affairs clinics in Minneapolis with “moderate [...]
18 'Harmless' Comments That Actually Hurt People With Chronic Pain

18 'Harmless' Comments That Actually Hurt People With Chronic Pain

If you live with chronic pain, you may be familiar with some of the “harmless” comments people say to those who are struggling. Oftentimes these remarks from family and friends are well-intentioned, but a lack of understanding about your pain and how it affects you may result in their statement totally missing the mark. We wanted [...]
black test on white background: Bullying is never right.

How We Can Help Minimize Bullying for Autistic Kids

I get the call, “Mrs. Sanford, there has been an incident at school.” My heart sinks as I hear that my 6-year old child with autism has been the target of bullying by her peers. We immediately convene multiple meetings to address the issue and to ensure this type of behavior does not happen again. [...]