This article originally appeared on VICE UK.
I have a condition called solar urticaria, which means I'm allergic to sunlight. That’s not a joke: Like some people are allergic to peanuts, I’m allergic to sunlight.
When I come into contact with sunlight, I get a rash on all of my exposed skin. It comes up within a matter of minutes, becomes hot and itchy, and if it gets worse, it turns into hives. I’ve had an anaphylactic reaction before where I’ve passed out (light-headedness and low blood pressure are typical symptoms of an anaphylactic reaction). Luckily, my throat has never closed up.
After more prolonged exposure to sunlight, parts of me begin to swell up. One time, I ended up in the emergency room after a bad reaction at the beach. Medical staff told me to take my leggings off because my ankles and feet were swelling up so much that they thought it might cause a problem. I also started throwing up because my body was in shock. You get some funny looks when you’re a 30-something woman sitting in in the emergency room alone with no pants on, while your cankles are on display, and you're vomiting into a paper bucket.
Generally, the symptoms disappear within a few hours. If it’s a particularly bad incident, there might be broken capillaries or bruising where the swelling was the next day. Sometimes it will also give me fatigue—an unpleasant symptom where you feel like you're completing the Twelve Labours of Hercules, but actually, you're just trying to make a cup of tea or go to the corner store.
When it first started happening, I had no idea what it was. But when I took my clothes off after a reaction, it would look like I was still wearing them in a kind of comedic inverse—a pasty, white skin version of a swimsuit would be left on my body.
"You get some funny looks when you’re a 30-something woman sitting in the emergency room alone with no pants on, while your cankles are on display, and you're vomiting into a paper bucket."
It took about 18 months to be diagnosed with solar urticaria, and even longer to get referred to the specialist dermatology department where I’m now treated. That’s two summers! Two summers where I wondered what the hell was going to happen to me every time I went outside. Two summers where I honestly didn’t know if I might go into anaphylaxis and die every single day. I’m already an anxious person; so for a while, I became so anxious that I didn’t like going outside at all, especially when it was particularly sunny. With my usual coping mechanism—exercise—off the table, I became clinically depressed.
As part of my diagnosis, I had to have a test done where they show different wavelengths of the UV spectrum on me to see which ones I reacted to, and how quickly. I reacted to the entire spectrum—fast. I asked the woman conducting the test if she was about to make me itchy. "Oh, it’s not that bad," she replied. With every spot of light shone at my back, I came out with a big red welt. "Wow," she said. "I’ve never seen a reaction like that."
The next day, I returned to the hospital to see the consultant dermatologist. He told me it was the worst solar urticaria reaction he had ever seen. "It must have been very difficult for you, coping with this," he said. I burst into tears and continued crying for approximately the next hour. Up until then, nobody—especially not any medical professional—had acknowledged what a difficult thing being allergic to sunlight is. Sunlight is ubiquitous. Sunlight is present every day, not just on sunny days. Sunlight is picnics, and ice creams, and long evenings, and romance. Sunlight is weddings. Sunlight is holidays. Sunlight is happiness. I can’t tell you what a relief it was to hear someone acknowledge some of that.
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There is no cure for solar urticaria, but there is treatment. I am on a combination of drugs—mostly very strong antihistamines. While this doesn’t mean I never have a reaction, it does mean that I can go outside without fear of death, which is something!
I belong to a Facebook group of people with solar urticaria, where we share stories and talk about the medications we’re on. Some of the other solar urticaria suffers don’t go outside in daylight, or if they do, they’re completely covered. They don’t live normal lives—they can’t go to social functions or play with their kids.
I dread that happening to me. I think it's partly psychology, though; the more you stay in and cover up, the more sensitive your skin becomes. It might seem frightening to go outside after your body has reacted in this strange and unpredictable way, but the best thing to do is stand in the light. I know I sound like a cult leader now, but that's the only way to live a vaguely normal life.
I have also undertaken my own treatment. There’s a process called "skin hardening," which isn't a literal hardening of the skin, but instead, means you build up a tolerance to sunlight, bit by bit. You might start with your lower arms, so that you can go out in a T-shirt, for example. My hands and face very rarely react because they are regularly exposed parts of my body. Instead of doing it in a lab in a hospital, I do it in the garden. I’m careful to do a small surface area at a time, and not to expose it for too long at first.
While I probably wouldn’t go on a beach vacation now, I still vacation in warmer climates. The first time I went open-air swimming after my diagnosis was in Montenegro, in clear water surrounded by mountains. I was wearing leggings and SPF 50, but it didn’t matter. In that moment, I realized that I’d been steeling myself for the worst; that I thought I’d never swim in the sea again, that I was worried my life as I knew it was over. Tears of happiness streamed down my cheeks as I felt a deep sense of gratitude for the lilting ocean all around me.
I’m glad I don’t feel that way any longer. I live a pretty normal life now. I stand in the light; I just get a bit itchy when I do it.
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