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, when I’ve passed out (light-headedness and low blood pressure are typical symptoms of an anaphylactic reaction). Luckily, I’ve never had my throat close up.
After more prolonged exposure to sunlight, bits of me swell up. One time, I ended up in A&E 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 A&E alone with no trousers on, your cankles on display, vomming into a paper bucket.
Generally, the symptoms disappear within a few hours. If it’s a particularly bad incident there might be burst 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 Labours of Hercules, but actually you're just trying to make a cup of tea or go to the corner shop.
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 comedy inverse. A pasty, white skin version of a swimming costume or running top would be left on my body.
"You get some funny looks when you’re a thirty-something woman sitting in A&E alone with no trousers on, your cankles on display, vomming 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 cards, I became clinically depressed.
As part of my diagnosis I had to have a test where they shone different wavelengths of the UV spectrum on me to see which ones I reacted to, and how quickly. It was all of them, 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 in a big red welt. "Wow," she said, "I’ve never seen a reaction like it."
The next day I returned to the hospital to see the consultant dermatologist. He told me it was the worst solar urticaria reaction he’d 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 SU, 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 SU 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 – stand in the light! – 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 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 the most 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 book a beach holiday now, I still go on holiday to warmer climbs. 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 factor 50, but it didn’t matter. In that moment, I realised 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 more. I live a pretty normal life now. I stand in the light; I just get a bit itchy when I do it.