Three patient leaders in speech bubbles discuss their chronic hives

Ask the Patient Leaders: Understanding Chronic Hives

Living with chronic hives can be frustrating, uncertain, uncomfortable, isolating, and more. These are just a few of the adjectives our patient leaders used to describe their hives.

It's important to understand a rare condition such as chronic hives from the perspective of those living with it. We started the conversation with our patient leaders below, and hope our community members feel comfortable sharing their own experiences in the comments below, or in our forums and stories as well.

Every voice is welcomed to join in, and you may just be the person to share a thought or feeling that others are feeling as well.

What are things only someone living with chronic hives would understand?

Response from CJ

There are three things I know that someone with chronic hives would understand. The first thing would be the ongoing need to take allergy medication every day, without fail, to prevent a flare up. Second, when chronic hives flare up, you will first feel itchiness, the burning, the swelling, then anxiety as a result, in that order. Finally, the need to become an instant chronic hives detective to determine what caused the flare up in the first place.

Response from Christi

Living with chronic hives is incredibly frustrating. There are so many unknowns with the condition, and even when you know what the problem is, managing the symptoms can sometimes seem impossible. Someone with chronic hives would understand the desperate search for triggers as so many things can lead to an increase in symptoms. On the rare occasion that there are no hives, you are always looking around the corner for when they pop up again. It’s a never-ending battle to keep symptoms under control.

Response from Ambre

I think something we would understand better is the frustration of living with chronic hives. The itchiness, the triggers, having to be so cautious, so we don’t trigger a flare up. It’s sometimes isolating and very difficult to adjust to. I think we have the unique aspect of what it’s like to live with hives, and how we best manage the itching. I know i’ve slathered calamine lotion on some spots when i’ve had a flare.

Response from Andressa

I believe that when you start the journey looking for answers you have no idea what is waiting for you at the other side of the road. Constantly looking for answers in food, jewelry, soap, etc, is one of the most crazy things only someone living with chronic hives would understand. The journey never ends, and there is always something new that you haven’t tried yet and want to add to the safe list.

Another thing is the uncomfortable feeling to be in your body. It sounds weird, but sometimes it can be so uncomfortable to literally be in your body. The burning experience, the itching, the hives, the combination of all this is something you can’t describe. I believe that the feeling of “It’s coming…..” only someone living with chronic hives might understand.

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