I loved swimming when I was a child. I would go to the pool every week and could be in there for hours. But when I was about 12, I noticed a change. After being in water, I felt itchy. Initially, it was just one of those things you don’t think about, but it got worse throughout my teens, to the point where it was more like a nettle rash, along with itching and burning. I thought I should probably see someone about it.

When I went to the doctor, they just brushed it off. They told me to change my soap and that it was probably nothing. But the burning sensation worsened. I was referred to another doctor who knew about this condition called aquagenic urticaria, which is a reaction the skin has to coming into contact with water. It’s incredibly rare – only about 100 cases have been recorded in medical literature – but I was told I had it.

The doctor advised me to limit my showers to one a week. When I do have a shower, I feel a tingling under the skin after a couple of minutes. Then it progresses to a gnawing, itching feeling, as if there is something chewing on the inside of my skin. It starts to burn and hives appear, and it feels as if my skin is swelling up. Depending on how much contact I’ve had, it can take up to two hours for the skin to calm down again. I try to manage with spot washes instead, using distilled witch hazel.

I was also told I should avoid rain. I had to start wearing coats to protect my skin when I was out, especially if the forecast was bad. And if it does start raining while I’m out, I have to get home as quickly as possible.

Even crying is a problem for me. If I do cry, it makes my skin hot, itchy and swollen, so I look as if I’ve had loads of Botox. My eyes seem to have no liquid in them; the lids swell up and it feels as if they are made of sandpaper.

There is no cure for aquagenic urticaria and while it can be managed, there is no telling what will work for any individual with the condition. I do what I can – I drink a lot of milk to avoid contact with water, my husband does the washing-up and I’ve tried simple things such as changing the temperature of the water in the shower or not using soap – but nothing improves it. I’ve tried taking strong antihistamines, too, but they just made me sleepy.

A German TV company who had heard about my condition paid for me to fly out to Berlin to an allergy centre: some of the medications they use have worked for other people with the condition, but are not available here. I hoped it might help, but it turned out to be a wasted journey: I tried to ask questions, but time constraints meant it was virtually impossible to get anything answered. Once the cameras stopped rolling, I would have had to pay for my own treatment, at a cost of about £1,000 a month. There was no way I could afford that.

Thankfully, my situation is not life-threatening. For others, it is; I know of people who have had to go to A&E several times a year because they can’t breathe. With mine it’s mostly just sore, ugly and exhausting.

I wish people were a bit kinder about it. I’ve had people laugh at me and tell me, “That’s impossible” or that I’m making it up. They say things like: “But we’re made up of water – how can you be allergic to it?” We don’t have the answer for that yet. I just know that I am.

I’ve joined an internet group for fellow sufferers and I also run an awareness-raising group on Facebook. There are about 1,000 members, so while the condition is still incredibly rare, it’s probably more common than doctors realise.

I do still swim occasionally – it’s just a case of dealing with the repercussions. On holiday, when it’s hot, I start sweating, which makes me itch, then I’ll see the pool and want to go in. And if I’m already itching, why not? But afterwards, when I’m covered in red splotches, I get horrible looks.

I would really like it if more research was done, so that we could finally have something that might help. Even if it’s just trials, I would be more than happy to take part. I would love to swim without pain again one day.

• As told to Daniel Dylan Wray

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