Cholinergic Urticaria

Explaining Urticaria to Friends and Family?!

by

To cut to the chase: I’ve had cholinergic urticaria for 3 years, after the first 6 months I found an antihistamine that stopped it so this was much less of an issue, but in the past 8 months that has stopped working and it occurs daily, sometimes twice, and doesn’t discriminate: happens at work, at home, on a dog walk, in the library etc., and recently my entire face has started swelling up too which doesn’t help things

I’m sure people can relate to how this affects me emotionally, but the hardest thing I have is explaining it to people without getting upset, since every time I explain what it is and how it affects me and how there isn’t anything doctors can do to help me I tear up and people don’t really understand why im getting so upset (as they have never had daily violent reactions like I do)

I also feel that family and friends although appear sympathetic they don’t realise how much it affects me, but im not one to go around telling a sob story either. It’s not necessarily sympathy I want, Id just love way of explaining why I ‘dont want to run to catch the early train’, or that I ‘cant to go for that 2 hour hike EVEN THOUGH it isn’t that steep and its a really beautiful day’ without having to go into details.

It sometimes feels like it would be so much easier to have a visible injury like a broken leg then people would perhaps understand.

I’m not 100% sure exactly what sort of advice im really after, but if anyone has anything they could share I’d really appreciate it. I just hate looking like a cry baby every time I have to explain that I’m allergic to my own body when I sweat!

Thanks in advance!
From a UK sufferer xx,

-Rebecca

Comments

  1. Hi Rebecca, I’m from the UK 21 years old and suffer from this it is awful trying to explain it, my sister and mum say “I get that! I itch a little when I sweat it’s not that bad” I then have to rant for 5 minutes about how it’s excruciating and they do not have it at all! It wasn’t till a man on embarrassing bodies with urticaria went on that my mum actually believed me and realised what I had because before she didn’t believe me. Just get a good explain ready so whenever you have to explain you make it good and they will never forget what it is hope you keep your head up x

    • Hey,
      when you say useful- ive read people use it to induce a sweat in the morning so that they dont have one for the rest of the day- is that what you mean?
      what have your experiences been with it?

      • I’m currently trying the sauna, it is hard at first, but then you like start learning how to support the pain and the itchy and I calm you down for the rest of the day. For me, I have help me. I feel less itchy, but it is a process, and in my 4th day doing it.

    • i have! that was the magical combination that cured me for those blissful 18 months!

  4. Hi, Rebecca I’m a UK sufferer as well Ive tried to explain to my partner what its like living with this condition and although I know she cares she doesn’t REALLY understand and its not her fault you have to have it to understand it. My advice is don’t worry too much about who to tell and how to explain it, do what feels comfortable at the time, focus on practical things you can do to try and prevent/cure it, worrying too much about trying to get people to understand can be overwhelming and add more mental stress which won’t help trust me I know. I wish you all the best on beating it you are not alone in this ?

  5. I know exactly how you feel about wanting it to be more apparent, because people just don’t get how debilitating it is not being able to raise your body temperature without becoming intensely itchy. I really don’t cry very often, but I have cried about it in the past because the situation is awful. My advice would be to try to be clear with your friends and family and explain to them how the hives effect you and just how awful it is. Best of luck.

  6. Leen

    Hi, I’m from South Africa and I’ve had urticaria for about 3 months now. I know exactly how frustrating it gets when you busy explaining and your family and friends still don’t understand you. I was at a pharmacy getting meds for the urticaria when I saw pamphlets explaining the whole thing. So everytime someone sees a random swell on my eyes or lips I have the pamphlet ready for them or tell them to google it.

    Though each itchy day we shall get through.

  7. This really is the saddest part about it. No one really understands what you’re going through and even though they try and help you, they just don’t understand whats it like. Im 17 and have been suffering since like two years but none of the people around me except my family knows. I cant tell anyone, not even my friends and have to make all sorts of excuses when they ask me to go somewhere with them. I used to play football and all kinds of stuff but now I dont do anything. Iv been made fun of and stuff alot lately cause idk my attitude towards everything changed so much, even though I hang out with the cool kids but even my friends make fun of my pathetic life. :/