3 Women Battling the Stigma of Living With Chronic Hives
Eileen Bailey | May 31st 2017 Sep 26th 2017
Having chronic urticaria can make you feel alone. When you’re itchy and covered with hives, you might isolate yourself. But you aren’t alone. People around the world live with chronic hives, including anywhere from .05 to two percent of the population in the United States according to the World Allergy Organization. Continue reading to find out about three successful women with chronic urticaria.
Vicki Lawrence is best known for her roles on The Carol Burnett Show and Mama’s Family. Her comedy kept us laughing, but she was also a talented actress, playing roles in numerous shows throughout the years, more recently as Mamaw Ruthie in Hannah Montana. She was also a dancer and singer, receiving a gold record for The Night the Lights Went Out in Georgia in 1973.
The search for an answer
After Vicki’s first outbreak and the accompanying itch, she searched for the cause. She went to see an allergist, who did extensive testing but couldn’t find a reason for the hives. According to Vicki, she changed soaps, stopped drinking red wine, and “avoided things that I thought were causing the hives,” but she still couldn’t find an answer. Vicki has chronic idiopathic urticarial (CIU), which means there isn’t any apparent cause.
You are not alone
Today, Vicki speaks out about her condition through the Asthma and Allergy Foundation of America. “I want to be open about my condition to show others that they are not alone in their struggle with this form of chronic hives,” she says.
Susan Hargrave shared her experience with hives via email. She taught language arts and art for 33 years before she had to give it up. The “live hive” action from chronic idiopathic urticaria caused her to miss too much work. She lived with hives, swelling, and facial angioedema almost daily. Her hives are an autoimmune reaction, which means they “aren’t going anywhere.” Her only choice is to manage them as best she can.
Reaching out to others
No longer able to teach, Susan started reaching out to others and now spends her time educating other people about the disease. She joined a private Facebook support group and is in the process of creating a nonprofit group, Itching to Help, to reach out to others living with CIU.
More about Susan
In the beginning, Susan tried to hide the hives, but once angioedema started, hiding them became impossible. Some people tried to avoid her. Once, when she was flying, the person seated next to her asked to be moved, fearing she was contagious. Although she tried to explain, the other passenger didn’t want to listen, she just wanted her seat moved. Knowing that fear drives this type of reaction, Susan tries to educate others — but sometimes they don’t want to listen.
The throat and tongue swelling is the worst part
Simona was diagnosed with CIU and angioedema in 2013. Hives appeared all over her body one morning, her eyes and tongue swollen. Some days she finds walking painful and can’t use her fingers because of the swelling. But in her article in The Atlantic, she writes that “the worst part … is the throat and tongue swelling.” Like many people with CIU, Simona saw many different doctors, but none could find a cause for her hives and angioedema.
Finding support online
Living with a rare disease is lonely and frightening. Simona turned to the internet, both to learn and find support. With the help of the people in these communities, Simona learned to face the disease. In her article, she writes: “I am completely optimistic that even if there isn’t a cure for angioedema in my lifetime, I will be just fine getting through it.” In an email, Simona told HealthCentral that she has now been in remission for three years and hopes the hives never return.