What It's Like to Live With a Rare Water Allergy on a Daily Basis

shower head, person running their hand through the water
shower head, person running their hand through the water

I am allergic to water. Things like taking a shower, doing the dishes/laundry, or even going for a swim, are hell for me. Most people don’t know that such a condition even exists, and when I tell them, they have a hard time believing it. Water is life, how can you be allergic to water? You’re allergic to life! I didn’t believe it either when I first heard of it. And yet, it’s true. More accurately, this condition is called aquagenic urticaria. As I cannot fully avoid water, I manage by taking a variety of medications.

I first heard of this condition a few years ago. There was a wave of news articles and videos about it. The news had discovered a girl who was living with it. I was shocked. “How is it possible?” I asked myself. I never once imagined that a few years later, that girl would be me.

I still remember clearly when it first happened. It was last year November. I was in the shower, trying to hit those Mariah Carey whistle tones, joyfully scrubbing away at the sweat and debris that had accumulated during the day. I loved showers; shower time was my favorite time of the day. Suddenly, out of nowhere, I felt an itch on my back. Then another itch, and another, and another. Oh no, they’re spreading! I quickly rinsed off, stepped out of the shower and dried myself. The itching intensified. I was now scratching myself ferociously, especially on my upper back and arms. Upon closer inspection, what do I see? Hives! What!

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Though not too far from where I was standing, the medicine cabinet has never seemed farther than it did that day. I made a mad dash to it, all the while still scratching, and shoved the medicines around looking for some antihistamines. Luckily, I had some desloratadine. I quickly gulped them down with some water. Unfortunately, the whole ordeal took 30 to 40 minutes after I had taken the drugs for it to go away. Being that it was the first time, I didn’t know much about what had happened; I just knew that it had happened. A few episodes in, however, and I had started to see a pattern. Every time I had lengthened contact with water – like a shower – my body erupted into massive pain, itching, and sometimes visible hives. It got worse and worse as time went by. It was then that I had the realization: Oh my gosh, I am allergic to water?

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The realization left me confused. Could it possibly be? Was I imagining it? And even if it were true, why now and why me? I did the only thing I could at that time: formulated a hypothesis and tested it out. Something had to be causing the reacting I was having, so what was it? Was it the soap I was using? Was it the oil I was using? Was it the moisturizer I was using? Was it something I was eating? Or was it the water? In an excruciating process that took several months, I eliminated all the suspects. All except the water. I could confidently say that it was the water, I could now tell someone about it or even approach a doctor about it.

I first told my family. I did not go smoothly, but I did not expect it to go smoothly. They were in disbelief because whoever heard of such a thing as a water allergy? However, as the saying goes, seeing is believing, and they believed me when they saw it for themselves. As it turns out, seeing someone frantically looking for some “magic” pills while scratching themselves like they’re possessed can be quite convincing. That and a Google search for “water allergy.”

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I had better luck with the doctor. Thankfully, he had heard of such ‘weird’ allergies. It was refreshing to have a doctor actually believe me, not just for this, but for anything at all. It’s what had made me take so long to see a doctor in the first place: if they don’t believe you for the normal stuff, why would they believe you for this? But I got lucky, this doctor did not dismiss me.

The doctor agreed with my findings; I was having an allergic reacting which was being triggered by water. Vindication! Unfortunately, there was nothing much he could do for me as the treatment for the condition is not clearly defined and there is no cure. I knew that much going to the appointment, but I still hoped that somehow, he had more information that the internet did not have; that the medical world had a cure the internet hadn’t heard of yet. My hopes were dashed. Still, I did not leave his office empty-handed, I left with a prescription for Ranitidine and Levocetirizine tablets. We decided we would give this treatment a few weeks and see if it works or not (it didn’t, I had Montelukast added to the mix a few weeks later — the jury’s still out on that). I also had my blood drawn to have my immunoglobulin E (IgE) – a type of antibody involved in allergy reactions – levels measured. My IgE levels were excessively high.

As I was leaving the office, I asked the doctor, “But why water specifically? And why now?”

“That’s a good question,” he said, as he took some time to ponder, “I don’t really have an answer for you other than ‘people can be allergic to just about anything and allergies can show up at any time.’”

I have since joined a support group for people with aquagenic urticaria and a similar condition, aquagenic pruritus. The one thing I think people don’t realize about allergies is how unexpectedly hard they can make your life. Water is everywhere, and many life activities involve water. Realistically, I cannot fully avoid water, so I have to live with the massive pain and itching. For some people, the allergy progresses to the point where it’s not just water, but any form of moisture, including sweat, that triggers the allergic reaction. That’s not a pleasant thought.

I try to take it one step at a time. As you can imagine, I now have a healthy fear of water. I am traumatized every time I think about taking a shower, for instance. Antihistamines don’t always work, and most people with water allergy have found other ways to cope (the ones in my support group swear by beta-alanine, though it has not been labelled for this use and it may not be suitable for everyone).

There’s hope for me that this might be just a temporary situation.

However, because it has lasted this long, it’s already at the chronic stage and it’s unclear how long it will last.

But still, I have hope.

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