Ask the Patient Leaders: Describing Chronic Hives

Living with chronic hives can be difficult to explain to someone who is unfamiliar with the condition. It is a rare disease, and so awareness is a priority for the community. There are frustrating and uncomfortable physical symptoms that go beyond just itchy skin. Not to mention, the mental and emotional toll that can result from unknown causes and triggers, cost of treatments, lack of sleep, unpredictability, and more.

We asked our patient leaders: How would you describe chronic hives to someone who has never heard of it?

Read their descriptions below for insight into what living with chronic hives is like, from people who deal with it on a daily basis and are searching for answers.

How would you describe chronic hives to someone who has never heard of it?

Response from Christy

Only 22 percent of people are predicted to experience hives at any point during their lifetime, and less than 2 percent of the population will ever have chronic hives. Since only 1/5 of the population will ever live through hives, it can be difficult to explain them to someone who has never experienced them. Chronic hives last longer than 6 weeks and can be very difficult to manage. When I describe hives to someone, I try to convey just how much it itches, like 1000 mosquito bites all over your body.

The itch can be so intense at times that I scratch my skin raw. I also deal with angioedema, which can make my face and mouth swell. Most people assume this is an anaphylactic reaction and can get very concerned about my airway, so I have to explain angioedema from chronic hives rarely compromises breathing. But, I do keep an epipen on hand in case that ever happens.

Response from Andressa

I would say, imagine that your body is in fire, than starts to itch like you are getting crazy, without knowing what to do to make it stop! It’s the most uncomfortable situation and diagnosis I’ve ever had to deal with. Chronic hives affects your body from the inside and the outside.

It's an uncomfortable invisible-visible health condition. (Invisible and visible, because you can’t see what’s happening in your body while you're burning from the inside, but you can see what’s happening on the outside. So it’s both ways!)

Response from Ambre

I’d describe it as itchy, uncomfortable, hot skin. I feel like I'm always itchy and I seem to overheat a lot easier. Imagine being itchy, and uncomfortable randomly. It’s such a frustrating feeling.

Response from CJ

Chronic hives is a condition that involves itchy rashes or welts that are provoked by either a known or unknown cause. It can be debilitating and can affected not not only physically, but mentally and emotionally as well.

Share your story

Join the conversation and help others understand what living with chronic hives is like. Share in the comments below, and even submit a story of your own here! We want to hear from you, and offer support and community to our members.