Chronic illness can strike in many unexpected ways. This has been the experience for so many of us. We never know how or when chronic illness will strike. It can often feel like you’re trying to navigate a minefield just to get through each day. This is the story of how I discovered I had one of my chronic illnesses: Cold Urticaria, and why I can never swim again.
Today, I want to tell you about this weird allergy I have and I have had ever since I was a teenager. I’m allergic to cold, and especially to cold water. It’s called Cold Urticaria. I didn’t know this until about two years ago. I knew I had the allergy, but I had no idea that it actually had a name and that other people had it as well.
I knew there was something very wrong, as I would get a strange rash and feel ill every time I was exposed to cold water, but it would take many years before I found out this condition was real and actually had a name. This is a challenge so many of us have faced along our journeys with chronic illnesses.
Here is how I figured out what is wrong with me. When I was younger, we had a little boat that we went to and a little island in Holland. When we would go there, we would go swimming and play in the water. When I was a teenager, I noticed that the longer I would stay in the water, the worse my reaction to the water was. It was very weird.
It’s Raining and I’m Burning!
The first time that it was really bad was when I was 14 years old. I had my boyfriend over on the weekends, and we went on a little sailboat on to the lake. Well, on this particular lake, the weather can get crazy and turn in seconds. We saw a dark cloud come in, so we turned around instantly to try to sail back to the harbor in time, but we didn’t make it.
The storm caught up with us. There was a lot of wind, crazy rain, and we were just drenched. We eventually made it back to the harbor safe and sound, but I was feeling weird. I felt like my whole body was on fire. I felt like I was burning. My mom took me in and she saw this rash all over my body that looked like hives. It felt like it was burning and I was shivering and in shock. My mom thought I was just really cold and needed to warm up. I took a warm shower, but it didn’t really do anything. So then she put me in a lot of blankets and we just waited it out. It took about ½ hour to an hour and my body calmed down and I was fine again. It was just so strange.
After that very extreme episode, I wasn’t able to just jump into the lake and swim anymore. If I were to jump into the lake and stay in for more than 5 minutes, I would get this rash and this reaction and these hives that felt like a sunburn. I didn’t feel it while I was still in the water, only after I got out, so I thought as long as I stayed in the water, I’d be fine.
At first, I didn’t realize it was the water itself causing this strange reaction, but thought maybe it was the beach itself or even the algae in the water. I thought the reaction might be triggered by warming up after I got out of the water. Little did I know that I was literally having an allergic reaction to water. Then I thought, maybe it’s the lake? Maybe it’s the sweet water so I’ll go to the beach and try to go into the sea. No matter how warm it gets outside, the sea water in Holland always remains cold. I noticed I couldn’t do that either. Now I thought if I can’t go in the lake and I can’t go in the sea, maybe I can swim in an outdoor pool since pool water has chemicals in it to help keep it clean. By this point, I still thought I may be allergic to the algae or something else in the water.
I went to the pool and the same thing happened again. By this time, I was about 16 and really wondering what was going on. I’ve tried everything. I cannot swim in lakes. I cannot swim in the sea. I can’t even swim in the outdoor pool, but I can go to the indoor pool and swim and I’m fine there. This made no sense to me.
That winter I was 16. I’m from Amsterdam and we ride our bikes a lot. I was riding my bike and it started to rain. I was in a restaurant and I didn’t have my gloves on and my hands started to burn like the rain was giving my hands an allergic reaction. I started breaking out in hives and it felt like my hands were on fire and extremely sunburned. It’s the worst! I started to make a connection— the rain, the water in the sea, the water in the lake, the water in the outdoor swimming pool…I am allergic to water! Something still didn’t make sense to me. I knew I couldn’t actually be allergic to water since I’m still able to take a warm shower without a reaction. Then something clicked. Maybe it’s just COLD water?
Still Many Unanswered Questions
Still unsure about what was actually causing this rash, I just tried to live with it for about 20 years, basically from 14 to 34. I don’t really think twice about it, I really just don’t go swimming anymore. I’ve tried putting my toe in the water and then my foot. I’d have to take my foot out in about 2 minutes because it starts to prickle and burn. That’s how I’d decide whether or not it was safe for me to go into the water. I’m not going to go in the water.
Something changed when I moved to Aruba when I was 23 years old. I lived in Aruba for about a half year and I was able to go in the water there. I could swim, stay in the ocean for a very long time and I didn’t have any reaction. I thought maybe my weird episode is gone so I can just swim outside again.
This change made me think it was just a transient episode and it was now over and I could return to the water. I soon learned this was not the case. When I was back in Holland and wanted to go outside again into the sea, I had the same reaction. I went on a holiday to the Azores Island, near the middle of the Atlantic Ocean, and got the same reaction there. I thought it would be safe to try swimming again since it had been so long since I’d had the reaction. I once again had the reaction and broke out in hives all over on my holiday.
“I’m Allergic to Cold!”
I finally realized a key difference between the sea in Aruba and the water she swam in at home in Holland: the temperature. I made the connection that the sea in Aruba has a better temperature. It’s not cold so I can go into the water there, but basically cannot go into the water in any other parts of the world. I took it as a given. I never really talked about it because I just really didn’t think about it. It wasn’t something that typically impacted my daily life.
A New Challenge
Recently, my daughter has taken an interest in water and swimming, so I had to face this challenge again. My daughter, who is now 7 years old, started to go swimming. First, she was a little bit afraid of the water. When she really went and and wanted me to come in with her, she was about 5 ½ . She was like, “Mommy, come swim with me.”, and I was like, “No. I cannot go into the water because I’m allergic to the cold water.”, and I realized this is actually really strange. When her friends come over, they’re also like, “is your mom going to swim?”, and I’m kinda like, “No” and having to explain to these 5,6,7 year olds that I’m actually allergic to cold water and I cannot enter the swimming pool or the sea for that matter. I started to realize that this is really weird and maybe I should know more about it. So I started looking online for cold water allergies or something and I stumbled upon Cold Urticaria.
But What’s Really Happening?
Like many of us with chronic illnesses, I have several conditions that are comorbid, and sometimes it can be difficult to distinguish if a symptom is related to one of the pre-existing chronic conditions or if it is a new problem altogether. I thought to myself, “You are allergic to the cold and now so many symptoms from over the years that I thought were from my fibromyalgia or maybe my Hashimoto’s or maybe an undiagnosed issue were all cold urticaria and I just never knew.” Prior to this, I had never researched it and wasn’t diagnosed by a doctor. The rash would come and go, so I didn’t even think about it when I would go to the doctor. That just never occurred to me.
I’m One in a Million!
This can be a particular issue with rare disorders, as I soon found out. After doing my research, I found out Cold Urticaria is actually super rare and only 1 in maybe a million people (or something really rare like that) have it, It’s literally that you’re allergic to cold, so i was just shocked. It was something I lived with for basically my entire life and so I really didn’t think about it too much.
Changes….
Now that I had a better understanding of what these reactions were and what was causing them, I began to make lifestyle changes to avoid this additional health challenge and sought advice from doctors as to what to do if I did have an episode. I just didn’t go swimming. I realized I can’t ride my bike in winter without my gloves. I realized living in a warmer climate would be better for my health, so after living in Holland for several years, I moved to the Canary Islands. At a point, I had these weird lumps on my toes and they hurt and looked like it might be some kind of allergic reaction. I went to the doctor and the doctor told me, “well, why don’t you put your feet in soda water (water with baking soda in it)”. Well, that just made it worse and I couldn’t walk because my toes got so swollen and filled with these bumps. I couldn’t even wear shoes anymore! The reaction seemed to be getting worse, but I still only got it in winter and I had no problems during summer. I had never linked all these weird symptoms with the cold water reaction, but my feet were only getting these weird bumps in winter in Holland. Things were starting to make more sense now. Now I know what the cause is and now that I know what kind of symptoms it has, I can tie all these weird reactions together. And that’s my crazy story about why I can never swim outside and can only swim in a heated pool or in the Caribbean Sea. So I just have to go there really often.
I learned that I should trust my instincts when I feel something is not right within my body. After a lot of research and through trial and error, I learned that Cold Urticaria, or an allergy to cold, actually does exist and discovered that it can be managed with certain lifestyle changes and avoiding conditions that trigger the reaction. As with any condition, other people may react differently to a stimulus, such as cold water, and have varying results with treatments.