So, enough talking about me and more talking about other people’s invisible illness’s!
Alice happens to be my childhood friend and before I share her story I would like to say a massive thank you to her for being incredibly brave with talking about her invisible illness and sharing it, as I know that it can be a very hard step to take.
My invisible illness is aquagenic urticaria, a type of skin “allergy” to water. I’ve had it since I was about 12 years old. I’m writing this to share my experience with my invisible illness.
Because it depends on contact with water, I can control my condition and when it affects me, so I can keep daily issues to a minimum. However, it has still had some effects on my daily life. It can be extremely demotivating to know the odds are against me. According to statistics, my condition only affects about 0.0000006% of the population… so I have found myself asking “why me?”.
When I have a reaction, it causes a painful rash which lasts around 45 minutes before it starts to fade, so I tend to plan my day around washing – there’s no hopping out if the shower and getting ready in 5 minutes, because wearing clothes when I’m having a reaction is quite painful.
Over the years I’ve tried various types of medications for different conditions, because I never got a formal diagnosis until earlier this year.
This is because it’s so rare, meaning there’s almost no research, and very little known about this condition.
As a result, there’s no cure, but right now I’ve settled on antihistamines as they can reduce the symptoms if I remember to take them about an hour before washing. It’s not perfect, but it’s really the only treatment I can use right now… one doctor gave the suggestion of using a barrier to stop contact with water. Which is all well and good until you realise they wanted me to smear vaseline all over my chest!It’s always been hard to speak about my condition because a lot of people dismiss me as they think it’s simply not possible, or that it sounds so unusual that I’m saying it for attention.
My twin sister has it as well, which helped a lot because it made me feel a lot less weird… more normal. I had (and still have) someone I could relate my issues to.
I accept it as part of me but even so it’s very difficult to come to terms with, especially when it came on so suddenly and there’s such little research around it so I have no idea whether it could change in the future. My advice would be that people can seem insensitive or uncaring. A lot of the time though, people can even forget you’re ill if they aren’t constantly reminded by a physical difference. A lot of people are shallow and only see what’s in front of them. Do find someone to talk to if you’re struggling, as I know how frustrating it can be.
If you know someone with an illness, treat them with compassion. Listen to them. If you see them being treated unfairly, support them or stand up for them.
-Written by Alice Baker and feautured photos of her are by Jack Green. (Find his instagram: @j.ack.green) .
What an amazing story to share! I hope it inspires and encourages people to share their stories like Alice has done to raise awareness and help people who are going through an invisible illness.
It seems that being diagnosed with the condition last year gave Alice a boost to share her story. This makes sense as she has proof of her illness without people telling her that its not a thing, and this is bound to happen to anyone with a rare illness, which is the sad truth. But remember that if Alice could get diagnosed with such a rare condition (as she mentioned it was 1 in 0.0000006%), then there is hope for everyone! Also remember that no one needs proof to explain themselves when it comes to an invisible illness.
Thank you again to Alice, and I hope that people take something from this post in a positive way!