What People Living with Chronic Idiopathic Urticaria Want You to Know

Kristina Brooks | Mar 17th 2016 Jun 1st 2017

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HealthCentral’s team connected with people living with Chronic Urticaria (Hives). The goal was to hear what they’d most like to share about living with the condition. Many agreed that the CIU is nothing short of “life changing.” Here are some of the powerful ways people are affected by hives, and what they wish others knew.

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You don't know what it's like until you have it

“[I’d like others to know] that they can’t comprehend what it’s like until they have it.” - Carmen

People may not always be able to know what living with urticaria is really like, but learning more about chronic hives can help encourage understanding and awareness.

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Know how to take care of yourself

“I know how to take care of myself, not by putting myself on excursions that will wind up taking me out of the game. I just want the understanding - that I’m not ducking out or avoiding anyone. I’m just trying to take care of myself.”  - Karen M.

From knowing when it’s time to “sit out” to crafting a healthier diet, taking charge of your health is something to be proud of!

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The anxiety never goes away

“It’s not just an itch.” “It’s not an allergy.” “The anxiety and the fear never go away.”  -Lesley-Ann, Inez, Emily

For those caring for someone with urticaria, it’s important to know the basics about hives - to be more understanding of the condition, and how you can show support.

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Coping can get exhausting

“Just because I have learned to cope doesn’t make me OK.”  "Even coping gets exhausting.” - Tina, Kerry

As with any chronic condition, coping can be one of the hardest obstacles to overcome. Leaning on the love, care, and support of others and dedicated organizations can make all the difference in living more positively with urticaria.

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CIU is unpredictable

“How unpredictable it can be! Even simple things like using hands to wash hair, chores like washing up, and things like walking can be painful - things most people can do without any bother.” -Erin

For relief from day to day pain caused by flare-ups, there are some known home remedies and lifestyle tips that may help.

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It's life changing

“It’s life changing! There is always uncertainty about what tomorrow will be like.” -Karen Y.

When living with CIU, anxiety about the next flare up can become a common occurrence. One of the best things a person can do is not let the anxiety hold them back from life. Staying positive with CIU is about learning to embrace the uncertainty, and enjoy the good moments at hand.

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It's often debilitating

[I want them to know] That it is real and often debilitating. I’ve just been told I have too much time off work, and that’s from a boss who used to suffer from it!” -Keri

Treating and managing chronic urticaria is no simple or easy task. But finding the best course of therapy for your skin can help minimize time away from work, life, and the things you enjoy.

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You feel allergic to yourself

“The feeling of being allergic to yourself.” -Robert

Many, but not all cases of hives and swelling are caused by the release of histamine in the body - causing an allergic reaction. Itching, swelling and pain for extended periods of time can feel like the body is attacking itself.

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It's constantly on your mind

“[Urticaria is] constantly on your mind…always wondering if you will wake up and it’s back. [But also] Trying to stay positive and enjoy the good days!” -Robert

A hives flare up can happen at any time, even after a person has been in a time of remission from chronic hives. There are, however, things one can do to minimize the chance of a flare up.

NEXT: How to Manage Life with Chronic Hives, Allergies and Asthma
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