Name change for this as outing. I have a condition called aquagenic urticaria, basically my skin does not like water at all, develops hives/welts when in contact with water, these get very itchy or even painful and have gotten infections in the past from scratching. I can't avoid water altogether, I have to wash myself, do washing up, go out in the rain etc. Can't go swimming, been banned by doctor as could get a severe reaction and drown, sounds extreme imo but I wouldn't want to go swimming due to the horrible discomfort anyway. I am prescribed antihistamines but they only help to an extent.
People simply don't believe me or take it seriously. It's not something I randomly talk about, in fact it's embarrassing, but it does come up in conversation sometimes and every time it raises eyebrows and I'm always made to feel shit about it. For example, when working with children, I was expected to go swimming with them. I explained why I couldn't, staff members didn't believe me, or they asked lots of questions trying to catch me out, like how do you even shower, what about the rain, wouldn't you be dead if you're allergic to water, are you allergic to your own tears? I'm not allergic to water for fuck's sake! It's similar to an allergy, but not actually one. People google the condition and point out it's not possible that I have it, because of news articles about people who could die from going in water or something extreme, or it's so rare why haven't I been in the news?
Even when I was being induced in the hospital, the midwives kept trying to make me take a bath, banging on about all the benefits of water for labour pains. Even though my green book literally said about my condition. When I pointed this out, the midwives said they never heard of this, acted like I was being dramatic, same line of ridiculous questions as always, one midwife told me to spell out the condition to her, even though she had my notes. And then she said she would be googling this to fact check it?! Why the fuck would I lie about this to get out of having a bath? I wish I could enjoy a good bath, but I can't!
Another time someone threw water all over me at work and I was told it was only water, it won't hurt me. I didn't have spare clothes to change into. I was made to feel really stupid about it all.
I feel like the only person who believes me is my partner as he has seen first hand how it affects me and when I've gotten infections. I'm just so tired of it all, having to defend myself all the time even to some medical professionals. Sometimes I think I should just lie, say I can't swim as I never learnt to, as it would be far easier than the truth. I hate having this stupid condition, it affects my daily life and I wish I was "normal". I don't know why it's so hard for people to believe me, I don't think it's that crazy at all!
AIBU?
To be sick of being questioned, disbelieved and belittled
Waterhatesme · 13/05/2021 13:34
I now have a mild version of aqua urticaria, I used to be quite bad (not as bad as you're describing but hives / rashes etc) but I'm thankful that they calmed down A LOT when I had DD. I still get head to toe raised rashes that are burning hot and sore though. I just wanted to let you know that you're not alone. In my experience people don't even realise this can even be a thing, I've met the same types as you, the types that throw water over you to prove a point or the types that laugh and say you're imagining it / can't possibly be true etc. Try not to let the ignorance get to you too much (coming from a consistent crier here ...that also flares my face!). Sorry I don't have much advice but once again though, you're not alone xx 
It is totally shit, I have a medical condition that 20 years ago a lot of people had never heard of. When people said I have never heard of that I did a head tilt and said oh surely it was part of your medical degree. 
The world is full of weird and strange illnesses and reactions to things. Being allergic to water must be awful. I always had a mobile hairdresser as I have reactions to shampoo/conditioner/moisturiser etc so it is easier to wash my hair at home with stuff I know will be okay. My mobile hairdresser has just become non-mobile and I got a rash from her literally wrapping a towel around my neck I assume from the washing powder she uses.
I even wash my hair over the bath in the evening rather than in the shower in the morning. If I do it in the shower I end up with red splodges all over my face and neck. People don't believe that either, Dh does though and now with a camera on my phone I can show my close friends how bad it is.
I hate the thought that somehow we are seen as attention seeking rather than having an actual medical condition.
I used to work in a school and one of the girls had this. I was pretty surprised when I read "allergic to water" but obviously took it seriously. She did say it just gave her problems if she got wet on the way to school or during PE and couldn't change out of wet clothes.
And being a normal teenager she didn't like carrying an umbrella .
Sorry @AnxiousWeirdo and @JohnsRaincoatLost about your experiences. I also hate that people think it must be attention seeking just because we have a rare condition. If I was seeking attention, I'd like to think I could come up with something more creative than some painful rashes
Someone once told me something along the lines of "well only 30 people in the world have that" like I was making it up. I'm not sure where they got this statistic from but clearly it is a lot more common than that, when I was diagnosed I wasn't marvelled at like some big medical mystery, just sent away with some antihistamines
@Waterhatesme If I was seeking attention, I'd like to think I could come up with something more creative than some painful rashes
I know, I have endometriosis which lists one of the top symptoms as painful sex which I don't have. Like if I didn't have it why would I want people to think I don't have sex and my poor husband must be gagging for it. Honestly. I do have the chronic fatigue part though which people have commented on it must be lovely to have a nap every day. Not really, it sort of pisses off your young children especially when you are on holiday and weekends away and days out with friends and you need to return to the hotel to "nap". FFS.
Especially now with google at people's fingertips being able to understand a medical condition you would think people would be more sympathetic. I have just culled arseholes from my life. Makes it much more lovely with just the nice people in it.
That sounds truly awful @lawandgin. I can't stand the hot weather because of the humidity or making me sweat which causes urticaria. Luckily a hot day is rare here, and I avoid the rain when I can (been much easier during lockdown!). I hope you don't have to face the cold weather too often, but also hot weather has the added risk of air conditioning for you. And yet sometimes the effects of not being believed and being put down can be worse than the condition itself, at least in my experience 
I have solar urticaria - at least the only stupid question I normally get asked is "does that make you a vampire"?...
Wow you have met some spectacular unpleasant people. My advice to you would be to be less apologetic about your condition. People don’t believe you?
Too bad. You don’t need to prove anything to them. If your employer demands that you go swimming, make sure you have a letter from your doctor that says you can’t. If they still try to push you to do this I’d say this is discrimination based on disability but I’m not a legal expert. The way you were treated by the midwives was absolutely horrible and very unprofessional. I hope you have complained about them to PALS, if you haven’t you might consider putting in a complaint one of these days because no woman should be treated like this during one of the most vulnerable moments of her life.
Shockingly unprofessional and insensitive.
for you
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My toddler son has cold urticaria. Never heard of it until he came out in hives this winter just on the way to nursery. Bless him. People are so stupid with their comments and the person who threw water on you is a bully. I am so sorry.
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