It started in the spring of 2006, when I was 62. My husband and I had been out for a lovely dinner the night before, and the next morning I woke up itching from head to toe. When I looked in the mirror, I was covered in hives. They weren’t little bumps, but big red blotches. I remember thinking, “What in the world?”
I called my daughter, who came over and immediately knew something was wrong. She happened to be a neighbor of Louisville, KY dermatologist Tami Buss Cassis, MD, who told her to bring me into the office right away. Dr. Cassis confirmed that I had hives, and we started trying antihistamines and other medications to control the itching while we tried to understand what was causing them. What I didn’t know then was that I would be dealing with them for almost exactly two years.
I Never Knew Where They Would Show Up
Every morning was different. The hives could be on my face, my legs, my bottom, anywhere, and they itched terribly. When they appeared on my face, my entire face would swell. I could sometimes cover the redness with makeup, but I couldn’t hide the swelling. Once, we were supposed to travel to Cincinnati for a funeral, and I woke up with my face so red and swollen that I couldn’t go.
It affected my sleep and my plans, but one thing I was fortunate about was the timing. I had been the co-anchor of a Catholic news program for the Archdiocese of Louisville for 20 years, and the program ended in 2005. The hives started the following year. I remember being grateful that I wasn’t still appearing on television while this was happening.
I Thought I Must Be Doing Something Wrong
Like anyone would, I wanted to know what was causing this. My primary-care doctor sent me for allergy testing, which confirmed allergies I already knew about, including shellfish. I avoided those things, but the hives continued. Dr. Cassis kept trying to help me manage the itching and even had other doctors examine me to see if they had ideas about what might help.
I kept wondering if it was something I was eating or using. Was it my soap? My detergent? Something I needed to eliminate? When something keeps happening to your body and you don’t understand why, you start questioning everything you’re doing.
Eventually, my next-door neighbor told me about her nephew, who had terrible hives like mine and had seen a specialist in North Carolina. My husband, Tom, and I looked at each other and said, “Why not?” We flew down to see him, and after examining me and doing blood work, he told me I had chronic hives, also known as chronic spontaneous urticaria (CSU).
Hearing ‘It’s Not You’ Changed Everything
The most important thing that specialist told me was that it wasn’t something I was doing. I didn’t need to keep blaming food, soap or something else in my daily life. He explained that he believed my hives were autoimmune and that the focus was on managing the itching while we waited for the hives to run their course.
That was freeing. I had spent so much time wondering what I had done to cause this or what I needed to change. Suddenly, I could stop blaming myself.
He also said something I’ve never forgotten: “Hives cause stress. Stress doesn’t cause hives.” Of course I was stressed. I was waking up not knowing where the hives would appear or whether my face would be swollen that day. But learning that stress wasn’t the underlying cause of my hives helped take away some of the guilt.
Then, One Morning, They Were Gone
The specialist had told me that chronic hives could last two, five or even eight years. Thank goodness mine stopped almost two years to the day. I woke up one morning and they were gone. They had simply stopped. I remember thinking, “Oh my God, thank you.”
If I could tell someone dealing with chronic hives anything now, it would be to have patience and work with your doctors to manage the symptoms. Most of all, I would tell them what that specialist told me: Don’t assume this is something you did to yourself. For me, understanding that was almost as important as anything else because it allowed me to stop searching for something to blame and focus on getting through it.
