By Rose Murray
Photos by Fiona Broadie & Farrin Khan
I have cold urticaria. I found out on Tuesday, Nov. 19 while being tested for an allergic reaction on my arm. So, what is cold urticaria? Well, it literally means cold hives, or that I have an allergic reaction to the cold when it comes into contact with my skin. The first time I noticed a weird reaction was when I decided to buy an iced coffee one night after work. It had been a long day, and I wanted to treat myself with one of my favorite drinks. Soon enough, my hand started to itch and turn red, then the burning sensation started. It was not long until my thumb became so swollen that I could no longer bend it. I ignored it though—brushing it off as some weird thing that would not happen again. And then it did happen again, but this time I was at home and I had touched a cold metal door outside. I spent a good hour of walking around the room complaining about how itchy my hands were.
I looked at my boyfriend and told him, “I think I am allergic to something.”
“Maybe you are allergic to the cold,” he said, trying to make a joke. Little did he know just how true it was.
The incident that broke the camel's back was when I went on break during work, and walked to the Campus Center to buy some food and a coke. I grabbed it out of the cooler without a thought and tucked it under my arm to walk back to work with. When I had finally gotten back, I set it down and soon saw that my arm was breaking out into hives. I do not mean just some red itchy spots either—there was a whole section of my arm that did not even look like skin anymore. I made an appointment at University Health Services and soon found out that I was allergic to the cold.
The idea of being allergic to a temperature made my head spin. To be honest, it made me feel like some kind of freak who had no place in this world. I am nineteen, and I live in New England. I am the only person I know with this condition, so it made sense why I felt so isolated. But it got even worse as my allergy developed over the course of the next couple of weeks. One night, while I was enjoying my favorite treat, Halo Top ice cream, my mouth started to feel weird. I put my spoon down as my mouth began to feel like it was covered in a thousand mosquito bites, and I experienced an itch that was incomparable to anything else I have ever felt. I threw the rest of the ice cream out, sat on my couch between my boyfriend and one of my good friends, and I began to cry.
My allergy was real, and I could not talk to another person about it because no one else understood the way that I felt. My mother and my boyfriend tried, but no matter what they said or did, I still felt like I was alone in my own little prison.
And so I turned to Google to learn more about my strange allergy. I found out that there is not a lot of information on this allergy. It is so rare that it happens in less than one percent of the population. To be exact, it happens in about 0.005 percent of people and it is the cause of one to three percent of urticaria cases.¹ It is so rare that my research had to be completed by going onto websites like the National Organization of Rare Disorders. I even found a few videos and articles about people who also have cold urticaria, and it made me feel like I was not crazy. To be honest, having access to the Internet made me feel less alone.
I also found out some not-so-fantastic news about cold urticaria as I dove into my research. It normally appears in people who are about my age, mid-teens to early twenties (at least I am somewhat average for something when it comes to this allergy). Then I learned that scientists have no idea how it happens or why people develop it out of the blue. I went from being able to drink my iced latte one day to not being able to touch the outside of an iced coffee. The most exciting news I found was that it goes away in about 50 percent of cases (and yes, that means that another 50 percent still have it) but I am going to hope for the best. The day I can eat ice cream again is the day I will be eating a whole gallon!
You really do not know how many things are cold until you can no longer come into contact with cold things. When I drink water, it has to be room temperature. I cannot buy any drinks that are kept cold in a cooler, and if I am at a store and want a soda, I have to ask for one from the back that is not cold. When I go home to make myself dinner, I cannot touch things in the fridge or the freezer without gloves on. Doorknobs and car door handles are also dangerous for me. To be honest, there were a few that even surprised me when it came to learning about my weird allergy. I learned I cannot hold onto the poles in the train without gloves on—not fun to find out during the rush hour commute. I learned that UMass Boston does not have a single sink where I can choose the water to be warm and not ice cold. Half the time, I just use hand sanitizer instead because the pain of my hands breaking out is just not worth it.
Still, I felt alone. Even though I knew other people were going through the same thing, it was hard not to have anyone to talk to.
That is when social media became less than a form of entertainment and more of a lifeline to find others who were like me. YouTube became a place to watch stories on the allergy to try and learn more about it. Instagram became a place to find people posting pictures of themselves living their lives to the fullest while not being able to even touch something as simple as an ice cube. It was inspiring, and it made me feel better about myself. I went onto Facebook and found support groups to help me deal with this hard truth. They posted a photo of someone competing in the winter Olympics who suffers from cold urticaria, and it made me feel like I was not losing out on my own life. Then I went onto Reddit and found a community that helped me learn some tricks to be able to survive the winter season.
Out of all of the social media sites, I would have to say that Reddit and Facebook were the two that helped me out the most. The one thing I did notice though, is that the websites and support groups mostly talked about the physical effects of what it is like to deal with cold urticaria. No one seemed to talk about the emotional effects on the sufferer and the family around them. This has been a tough time for my family and I. I feel like I am a burden to the people around me because now I cannot touch cold things. I ask my boyfriend to make me dinner at night and to help me do other things. Then there comes the problem when he tries to help me too much; he does not want to risk a reaction, so instead of having me do something, he does it himself. Then there comes the emotional pain of the people around me, and the judgement from people who do not think it is real. The last time I saw my mother, she watched me slip my gloves on before leaving. Her eyes looked so worried, lost in a sad way because she had to watch her daughter go through something crazy. My boyfriend broke down one night because he could not handle watching me go through something like this.
The one thing I need to remember through all of this is that I am not alone. If I had not been able to find others on the Internet, I would probably be really depressed right now, turning into a human body who had no drive for life. If I could say one thing, I would say this: thank you to the other people with cold urticaria for letting me know I am not alone.
1 “Urticaria, Cold.” NORD (National Organization for Rare Disorders). <https://rarediseases.org/rare-diseases/urticaria-cold/>