I was 11 years old, rockin' Limited Too, and on a mission to find sea glass along the Jersey Shore when I broke out in hives for seemingly no apparent reason. I remember feeling cold (it was early October), and out of nowhere, I began to itch.
Curious, I inspected my hands and discovered they were covered in angry red bumps that were slowly crawling up my arm. I ran back to the house where, terrified, I showed my parents the itchy welts which now covered my hands, feet, calves, and forearms. I was met with a hug and, "Oh, this happens to your cousin Liz and your aunt whenever they swim. It's probably just from the salt water," from my mom. She gave me some Benadryl and a blanket and I slept off the reaction.
The following winter, sporadic hives would appear if my bare hands touched the snow or, weirder yet, if I held cold items in the frozen-food section of the supermarket. Although there was a pattern forming, it didn't really make sense, and for the most part, I just shrugged it off. This stage wouldn't last for long.
Living with a mystery allergy is no fun as a kid
Shit hit the fan at my sixth-grade class pool party. Wanting to join my friends to get pizza, I climbed out of the water, and time seemed to freeze. Kids and teachers stared at my body, which was covered head to toe in blotchy welts.
A hysterical mother chaperone, Ms. L, nearly went into a conniption, fearing I was contagious — she didn't spare me shame, either, separating me from the group, warning all the other kids not to come near me, and calling my mother to have me picked up immediately.
"You look disgusting when you get out of the water and nobody wants to get, like, herpes or whatever you have."
My mom took me to the the dermatologist, who had no idea what could be causing the hives. She just suggested that I probably was allergic to grass, and said there wasn't much to worry about.
So we didn't, and the reactions continued. Another winter saw the mysterious hives come and go, and by summertime I'd been in enough pools (#suburblife) with my peers for them to notice my skin's funny reaction upon exiting the cold water.
When my "friend" Haley held a pool party, I wasn't invited. Her reasoning: "You look disgusting when you get out of the water and nobody wants to get, like, herpes or whatever you have." That stung. For starters, it wasn't herpes — being 12 is already awkward enough, so you can imagine having to deal with a rumor that you had some bizarre full-body form of herpes. Twelve-year-olds don't have the best handle on infectious disease, or generally treating people with humanity.
The reactions get worse
Though I'd previously broken out while swimming in chilly waters or being cold, by the time I was 14 I began to experience them when doing other activities that elicited sweating, like exercising. My parents decided it was time to get to the bottom of these reactions.
Five doctors later and an eventual meeting with an allergist, we had an answer. I was given the ice cube test, in which the allergist held an ice cube to my hand for five minutes. High-tech, I know. Sure enough, hives appeared, and the allergist informed me that I had conditions called cold urticaria and physical urticaria. Put simply, I was allergic to the cold and working out.
How the hell does this happen?
It had never occurred to me that you could be allergic to something as abstract as "the cold." What's going on in my body when all of this is happening?
Well, according to Dr. Smruti Parikh, an allergist and immunologist at Summit Medical Group in New Jersey, cold temperatures and exercise can cause the activation of mast cells, which leads to the release of histamines and inflammation, hence the appearance of weals — aka hives, aka urticaria. In other words, my body perceives the cold or sweat exposure as a foreign invader and attacks the healthy tissue that's exposed.
There are even some rare instances of people with sun urticaria (an allergic reaction to the sun), aquagenic urticaria (a reaction to water, regardless of temperature), or even vibratory urticaria (an allergic reaction to vibrations, think clapping hands, mowing the lawn, or vibrators, presumably).
For years I lived in fear that people would isolate me if they ever saw my allergies.
One of the more frustrating aspects of these allergies is that there's not really a strong theory on why they occur, though in some cases it could be genetically influenced. Illnesses may cause these bizarre allergies, too, like viral hepatitis, chickenpox, lymphosarcoma, cryoglobulinemia, chronic lymphocytic leukemia, and mono.
The hives aren't usually dangerous, but there's a small percentage of people who experience extreme reactions that could induce shock. "Certain patients with cold urticaria, like those who experience systemic weals (hives covering your entire body), are at risk of shock or losing consciousness if they are exposed to cold water... like swimming in a cold ocean, a cold pool, or a cold shower," says Dr. Parikh. "Some people with cold urticaria are also sensitive to things like cold beverages, which puts them at risk for their throat closing up if they drink them. I always prescribe an EpiPen along with antihistamines because of the potential of a life-threatening reaction."
If you've broken out in hives and weren't sure why, Dr. Parikh recommends scheduling an appointment with an allergist, as there are all kinds of urticarias out there, some of which can be life-threatening. The allergist I saw suggested that I take a non-drowsy antihistamine (like Claritin, Zyrtec, or Allegra) and invest in an EpiPen, just in case.
How I deal with my bizarre allergies now
Suffice it to say it hasn't always been a walk in the park. I was a pretty active kid who liked to ski and adored to swim, so I was scared people would keep reacting like I was a gross mutant for the rest of my life. For years I lived in fear that people would isolate me if they ever saw my allergies.
I tried not to let it drastically affect the things I loved, like swimming in pools or the ocean, nor did I let it hold me back from skiing. It was easy to hide it enough with ski jackets or towels — or the fact that people were too busy focused on themselves to notice my blazing-red body.
As I got older, though, I started getting scared of how people might judge me during intimate moments. Think about the times you've gotten so hot and heavy that it made you sweat. Now imagine that in those moments your skin would break out in flaming-red hives that were itchy and kind of painful, but ultimately looked way worse than they were. I was absolutely terrified. It only added to the list of insecurities I faced as a young adult.
I only had two love interests make me feel like a freak about my allergies…
At the same time, I didn't focus on my allergies 24/7. Life kept moving. My symptoms began to decline with age, and my reactions weren't as severe. Sometimes, they never even happened at all. Since my allergies aren't contagious, I generally didn't mention them to people unless they asked or I had a reaction that caused me to need assistance from other people… or I was next in rotation with a bunch of stoners.
I only had two love interests make me feel like a freak about my allergies — I was exposed and vulnerable, and both times were equally terrible and embarrassing. I understand people being weirded out, but damn is it dehumanizing when someone makes you feel like a freak because of a condition you can't control.
But, as is often the case with chronic conditions, the patient finds ways to manage it. From sixth grade on I started keeping a few Benadryl with me at all times. I also learned to be more wary of triggers that could lead to a larger attack (i.e., long exposure in cool water, certain heat changes), and was mindful about what to do if my allergic reaction got out of control. Today, my allergies only creep up on me if I swim in cold water for more than 15 minutes, or exercise in really high heat (think hot yoga) — both can be exacerbated if my allergies are already bad due to pollen or pet dander.
While it's been challenging, my allergies have never gotten to the point where I go into shock — there are even some positives that come with them. The best one? Boy, do I have an excellent "fun fact" for an ice breaker.
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Katie Van Brunt is a writer who's allergic to the cold. Or did you already know that? Follow her @thekatievb.