Experience: I’m allergic to the cold

In 2012, when I was 37, I started noticing that my fingers would get swollen and red whenever I held an iced drink. I thought it was strange, but I didn’t know what was going on. Then the same thing would happen when I handled food from the fridge. My instinct was to put my hands under hot water, but that made it worse.

For a while, that’s all I experienced. I thought it was weird but not dangerous. I was busy with my three children, so didn’t worry.

But then other areas of my body started to react. Once, I was eating ice-cream when the inside of my cheeks started swelling and my tongue felt weird. It was scary.

In the spring of 2014, I went to the doctor. They referred me to an allergist for a test – they put an ice cube inside a metal container and stick it on your arm, cover it up and leave it for 10 minutes. When they take it off, they watch to see what happens as your body warms up. That is generally when the hives and swelling start.

The allergist confirmed I had cold urticaria, a rare condition that means you’re allergic to the cold, and that it was a severe allergy, meaning I could have an anaphylactic reaction. The doctor prescribed me some EpiPens and said I could take antihistamines, but that they didn’t always work.

What I didn’t realise back then was just how much this would change my life. I joined a support group on Facebook. Reading other people’s stories made me nervous about what could happen to me. I thought: “What if it gets worse?”

Cold urticaria affects people differently. Some have a genetic version and others, like me, develop it for no apparent reason. It’s an allergy to cold temperatures that can be triggered by the weather, but also temperatures inside buildings, and things like food and drink.

I can’t eat or drink anything straight from the fridge or freezer. I’ve learned how to take the chill out of things without making them hot and gross. I microwave yoghurt for five seconds, and then another five if it still seems too cold.

Over the years, I have worked out that my temperature threshold is about 73F (22.8C). There are variables: if it’s slightly colder but the sun is fully out I can comfortably be outside, but I would struggle if it’s warmer but windy. I have four weather apps and temperature gauges in every room of my house.

I live in Sacramento, California. From mid-October to around April, it’s hard for me to leave my house. It doesn’t get freezing cold, but in the dead of winter I have to bundle myself up in layers.

Summer is really hot, so we keep the air conditioning on in the house. I wear a cardigan, drink hot coffee and stay away from the vent. Showers are a huge issue: the longer I take, the hotter I get, which causes a bigger temperature difference between my body and the air. Quick temperature changes are a huge trigger. I always carry two EpiPens, hot coffee and a flask of whisky, because it warms you up.

I also wear a medical bracelet that says I have cold-induced anaphylaxis. If I were ever unconscious and given IV fluids, they would need to be warmed before entering my body, otherwise I could die. That’s one of my biggest fears.

I don’t tell people about my allergy any more. They make stupid jokes, like: “I hate the cold. I’m allergic, too.” I want people to take it seriously.

My condition has affected my life in a lot of ways. I had to give up my career as a photographer and am now a stay-at-home parent. It restricted my ability to do fun things outside with my children, which makes me sad.

I wouldn’t wish this allergy on anyone. I often have dreams that it has disappeared and I’m eating ice-cream or walking along my favourite beach. Cold urticaria can get better or go away, but generally it’s progressive.

I don’t hold out hope that it will go away, but I do appreciate time outside in a way that I didn’t before. For me, feeling the sun on my face on that first day when it’s warm enough to stand outside and take a deep breath feels life-changing every single time.

As told to Isabelle Aron

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