Ask the Patient Leaders: How Has Chronic Hives Surprised You?

If you are newly diagnosed with chronic hives, unfamiliar with the condition, or simply going through a new stage of your journey, it can take surprising turns. Symptoms, triggers, treatment, cost and more can all contribute to the uncertainty of chronic hives.

So we asked our patient leaders: What has been the most surprising part of living with chronic hives?

Read their answers below and you may be surprised too! If you or a loved one have been dealing with chronic hives like they have, we hope their replies provide validation and help others feel seen in their struggles.

What has been the most surprising part of living with chronic hives?

Response from Christy

The most surprising part of living with chronic hives is the amount of money I spend on products to take care of my skin! My hives have been really bad for the last year and a half and I’ve had to change some of my hygiene habits. I’ve spent hundreds of dollars on lotions, changed my body wash and skin care products, and have a whole drawer-full of different creams and ointments to help calm my angry skin. I never thought much about lotion until my hives got out of hand. Now I can tell you all of the different kinds of skin moisturizers and give you a run down of the different strengths of steroid creams. Not a talent I ever expected to have.

Response from CJ

What’s been surprising to me was that I have to rely on allergy medication year round, which is something that I never had to do prior to this condition. It’s been helping me so far and I’m afraid not to miss a dose in concern that the hives might return.

Response from Ambre

Having to be careful when traveling. I think that’s often overlooked. Also realizing just how much my skin comes into contact with a day. It can be overwhelming once you realize it. Sometimes it seems gross, when you really think about how many different things you come in contact with in a day. I’ve had to learn my triggers, and work to minimize being exposed to them.

Response from Andressa

The diagnosis in my 30’s and the fact that no one knows how to deal with it or how to get rid of it. It’s crazy to see how in 2022 even the doctors don’t have answers yet, that had been an unpleasant surprise for me and my family. I remember going to the doctor the first time for my hives, and I thought that I was going to the allergist, get some pills and be better. Now 3 years later I’m still looking for answers. All the new technologies and research possibilities are not enough to help us to get rid of this. If there is a research option or clinical trial, I would definitely participate to be able to help others not to go through all of the uncomfortable situations like I’ve been through.

Share your story!

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