To be sick of being questioned, disbelieved and belittled

[Waterhatesme]

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!

Sorry, just think I should clarify the person who threw water over me was a child not a colleague. The child didn't know about my condition. I wanted to be able to leave the premises to get some dry clothes, it was my colleague who was then putting me down and making out I was being dramatic and it's only water and won't hurt me. I then had to spend my shift in wet clothes and in actual pain.

People are weirdly judgemental considering that we have google at our fingertips. I mean I regularly have “is that a real thing?” moments but it’s not hard to verify.

I get itchy legs from water, and cannot wash my face, which is nowhere near what you’re describing but I’m hugely sympathetic.

@Waterhatesme

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

The Anaphalaxis Campain (2016) reckons there are only 35 of you in the world. But that can't be right! You, waterhatesme, my uncle - who is in his 70s so you can imagne how difficult it was to get any kind of diagnosis for him in his youth!

And a BBC article that quotes the AC has another 3! T

So someone somewhere is not recording you all properly!

www.bbc.co.uk/news/health-37625178

Whether it is a condition such as yours, or an allergy, or even intolerance, people in general are V often dismissive ime. It's not right at all, you have my sympathy op.

I only know about this condition, because a character in a Dawn French drama had it - I don’t think it is particularly well known even among medical professionals (I used to be a nurse, and never heard of it during my career), but that is NO excuse for people to disbelieve you, question you or even throw water at you, @Waterhatesme. So no, you are not being at all unreasonable to be sick of they way people have treated you!

I've a condition where I'm allergic to random foods, medications, creams , make up, smells etc etc and some people with my condition have what you have , reactions to water. People think I'm crazy when I tell them that their perfume or shampoo can make me sick. If you touch my skin with the wrong cream on and ill come up with hives. So I can totally relate. Even medical professionals think I'm insane. Do you see an immunologist ? A lot of people with your condition see great success with xolair injections.

People are dickheads. I have trigeminal neuralgia and suffer with my mental health too (CPTSD) and People don't believe that there is no cure for TN. Tell me to just take painkillers. Yeah right, like i haven't thought of that!

How DO you drink though? Do you have to use a straw or something so it touches your mouth as little as possible?

I totally get you op. My son has oral allergy syndrome. Like yours, it's not a true allergy as such. But the protein in fresh fruit and veg is very similar to a protein in birch pollen and so he reacts to it like it 100% WAS an allergen. People have no issue at all believing that he is allergic to every type of nut..... but raw carrots? Apples? Celery? Don't be bloody stupid!! You can't possibly be allergic to FRUIT AND VEG!! Then they get really mega disbelieving when they see him eating a roast dinner with loads of broccoli, carrot and Swede and having apple pie for pudding. He must be lying for attention..... not Because heat destroys the protein but they just can't get it.

His airways swell and he gets awful hives and blisters in his mouth and oesophagus. But yeah, he's making it up.

Ugh I'm so sorry, people can be such idiots around allergies! DS2 had a relatively common allergic reaction to sunlight on his ears a few weeks ago and at least two different people told me that I was making it up I just said "I don't think I could have invented a name like juvenile spring polymorphic light eruption but you can google it if you like"

I also get pompholyx eczema on my feet and the number of people who have told me it's really athlete's foot and it's nothing to be ashamed of, or that it can't be eczema as you don't get blisters, or that if it was eczema I would be using creams (I use Haelan tape sometimes instead) etc etc etc It's like everyone and their dog is suddenly an expert. I am this close to asking the next person if they would like to provide their advice directly to my dermatologist.

But just to say OP - I support you, if I was your friend or colleague I'd back you up 100% to these fools. Next time it happens, just remember all of us MNers at your back!!

People can be so ignorant sorry you have to deal with that. It’s bad enough if you have something people accept is real but are dismissive of it or think you could easily get over it if only you did X or Y. It must be extra burdensome to deal with feeling you need to convince them it’s real and then take seriously.

It's not as severe an issue as yours but I have been persistently disbelieved over the years that I am allergic to plasters and adhesive tape products, mostly by actual healthcare professionals

Not only do I ALWAYS get

"Oh but this is Micropore you'll be fine"

No. No I won't.

I have been repeatedly since I was a teenager accused of lying/being difficult and making it up for attention. By HCPs.

When I was younger (the 90s) I had people force plasters on me and be like :

"Oh...I see what you mean now"

When the skin was raw and blistered within 2 hours.

Solidarity OP ✊

I have aquagenic purinitus, so same but without the hives, but horrendous itching, its horrible and causes me a lot of anxiety around having to force myself to have a shower because i dont want to deal with the reaction etc.

I have cold uticaria too but that doesnt cause as many issues

People dont get it about the aquagenic purinitus, only my husband

Oh you poor thing OP, I also had the mild form between puberty and my first child so was obvious hormonal for me as well. It was awful and so painful at times, but yes the only people who believed me really were close family and my DH who had seen it first hand. The dr suggested I have a paracetamol and glass of wine before a bath!
If it were me now, I’d be very dismissive and say ‘why on earth would I make it up, google it’ but then I am quite stroppy these days.
I imagine you’ve tried everything over the years but I found the areas I shave to be the worst. King of shaves gel does help me.

@Waterhatesme it's pretty rubbish - I too get hives in the hot weather, I think because I sweat, then I get cold and it sets me off. I also get them around my waistband/bra straps, but I am told I don't have delayed pressure urticaria. Honestly, I've given up caring what it's called, I manage it as best as I can and anyone that doesn't like the fact I can't sit in an 18 degree office can do one! You are right that sometimes the worst part is not being believed. I think the occupational health doctor I saw would never have believed me until I showed her photos. I actually once had a GP ask if I had any photos with my face in (take from that what you will, he clearly didn't believe me). Now I know that most medical professional have not hear of, nor do they understand urticaria. Luckily I found a specialist, but that was a few years ago and he was about 90 years old then!

@ChiefBabySniffer I have just started noticing tingling/discomfort when I eat apples, grapes, satsumas and pineapple. I think I'm developing oral allergy syndrome and I really think there is a link with urticaria, as well as of course hayfever (which I also suffer with but this didn't start until my early-mid 20's!) People are ridiculous, why don't they just Google it and see IT'S A REAL THING!

I think the positive thing to come from this thread is that there are more of 'us' out there - I've only ever known of one other person to suffer with cold urticaria and while I'm sorry you are suffering too, I'm pleased not to be alone!

i have the solar version so on holiday somewhere hot i get weird looks because im walking round in long cotton trousers and long sleeved cotton tops where everyone else is walking round half naked but its not worth the sheer itchiness and scabbiness to go round half dressed and anithistmines and betnavate cream only go so far

The same can be said of quite a few medical conditions. Unless people have experienced something themselves or someone they’re close to so they’ve seen it first hand they seem to struggle to believe that such an illness exists.

You have my sympathy OP. It sounds incredibly difficult to live with especially when others are incredulous and unhelpful about it!

I think in your position I’d always have a change of clothes with me just in case.

I'd have gone to HR about the water at work. That's a health and safety issue and bullying.

It sounds awful Op. My partner has chronic urticaria (not aqua) and if I rub his arm it sometimes comes up in big red welts, it's awful.

My sympathy.

I'd have gone to HR about the water at work. That's a health and safety issue and bullying

Absolutely.

I believe you! I can get random itching after a shower (even if no product used).

One tip: water from the shower affects me much more than water from a tap (weird I know). Have you ever tried bathing using a bucket and large plastic mug?

Some people are stupid, some people are horrible, sometimes they breed and create humans that are stupid and horrible.

I have type one diabetes, so a really common and so well known condition. But bloody hell stupid people like to interfere “are you allowed to eat that?” “You’re not fat” “did you used to be fat?” “you can’t eat that” “you can’t eat fruit” “you can’t drink alcohol”.

With issues like the water at work that really should have been referred to HR.

I have demographic urticaria, luckily a daily antihistamine controls it most of the time but i get questioned about any red lines on my neck or arms asking if i have been self harming or something.

Thank you everyone for being so kind and understanding, what a breath of fresh air! And regarding the issue at work, my company has no HR and I'm already taking legal action against them for discrimination anyway

I might ask 'How the hell does that work then?!', in a horrified voice, but it would only be because I would be trying to imagine how you manage.

I presume you've tried less invasive ways of staying clean? Oils and talc and stuff? I don't shower as often as other people, but I am clean! I just don't necessarily use soap and water!

I watched a tiktok from someone with this condition. I'd never heard of it but it looked awful to live with. I'm sure there are bloody loads of health issues I've never heard off. But I'm not a fucking doctor! So if someone tells me about something my first instinct isn't to disbelieve them. (because I'm not a dick)

Unfortunately I don't think lots of people are very sympathetic about health issues. Particularly when they mean we can't do things. I'd sort of hope for better from the midwives. But in reality I know better.