As told to Erica Rimlinger
The hives first appeared when I was in my early 20s, following a trip to the laundromat. Putting on my newly clean clothes, a rash perfectly outlining the shape of my bra and underwear formed. Shocked and incredibly itchy, I called my mom, who guessed I used too much detergent in my laundry or was having an allergic reaction. She recommended an antihistamine, which didn’t even take the edge off the never-ending itch.
Unable to sit down or tolerate clothing touching my angry, red welts, I called the Ask-a-Nurse hotline my health insurance required. After an hour on hold, I was cleared to go to their urgent care. There, a doctor gave me a steroid shot and wrote me a prescription for several days of steroid pills. He told me to stay on an antihistamine and advised against using that detergent brand again. The angry, red hives quickly cooled to pink, calmer ones, then, nearly a week later, disappeared. I thought this episode was a learning experience and that it was over.
But it wasn’t over: The hives returned. Each time, my healthcare providers and I assumed some unknown allergen had irritated me. I’d get a course of steroids, keep taking antihistamines and the hives would disappear like magic over the next week. I didn’t care about any long-term side effects of taking steroids: I just needed them to work when I needed them.
I kept detailed notes on what I ate and used on or near my skin. I saw an allergist, who couldn’t find a culprit that was causing the outbreaks. In my 20s and 30s, the outbreaks were relatively short, but I’d have to miss life for a week while I dealt with them. The itch was too intense to allow me to focus on anything for very long, and no cream, pill or treatment provided enough relief. In my 40s, the hives were staying longer and not responding quickly to the steroids or multiple antihistamines. By then, when the outbreaks lasted well over a week and felt unmanageable, I was desperate for relief.
If you’re imagining hives as a collection of small, red, itchy bumps like mosquito bites, you’re not quite getting the full sensory experience. My hives erupted in painful swells that couldn’t be touched without angering my body and making the itch even worse. It was as if someone shaved off all my skin with a razor and covered me with wool. During my flares, a light scratch of the fingernail along my skin would turn the line into hives. I could write my name in hives on my skin, a phenomenon called dermatographism.
In 2019 I had a hive outbreak that lasted months, meaning my hives met the definition of “chronic.” As I had with shorter outbreaks, I found it nearly impossible to work, sit, function or do simple activities like bathing. I had hives every day and didn’t know which days they might be more severe or where the swelling and itching would move to next. The painful itch was oppressive — and nothing relieved it.
During flares, I continued to document all the details of my life, looking for any reason for the outbreak’s appearance, disappearance, worsening or relief. I couldn’t find a pattern, an allergen or any clue why this was happening. During my last flare, I also couldn’t find any form of relief that worked anymore.
There are many myths about chronic hives, and one is that simply reducing stress eliminates outbreaks. As a woman experiencing a chronic illness, I found medical staff commonly telling me if I would just be calmer, I wouldn’t be sick. But, my regular notetaking about the circumstances surrounding my outbreaks showed me they were not caused by my emotions. It felt dismissive for people to imply I could control the extreme physical reaction my body was having by simply not being stressed — as if that were even possible.
CSU on Kristen’s legs
The first week of the 2019 outbreak was the worst agony I’d ever experienced, then the outbreak lost predictability entirely. I could not sit still given how severe the itching was. It prevented me from sleeping, working, being with friends and family, and doing basic activities. After a few days, things improved, but the hives were still present every day: first for weeks, and then months.
A while back, I’d been diagnosed with an autoimmune disorder called Graves’ disease. I wondered if my hives could be related. After some research and consulting with my immunologist, I learned about chronic urticaria (CU), or chronic hives. In most people with the condition, its cause is never identified, which is called chronic spontaneous urticaria (CSU) — but the outbreaks are strongly linked to autoimmune issues.
I was taking steroids and quadruple doses of antihistamines, and they provided no long-term relief. I finally found an allergist/immunologist who knew that CSU is almost never an allergic reaction — despite common misconceptions. She knew what to do next and that gave me great hope.
I continued taking antihistamines and started a treatment that required a shot in the back of each arm each month. By month three, I hadn’t seen improvement. I called a friend who is a pharmacist and asked, “Is this going to be forever? Why can’t I get rid of these?”
The friend contacted a trusted colleague in the field who told me to stick with it, so I did. Almost like clockwork, by month six, the hives were completely gone. I could cry just thinking about it today. What an incredible relief.
Since that time, I have not had an outbreak. While I’ve had an occasional, isolated hive, I’ve had no flare-ups since.
I didn’t intend to become an advocate for people with chronic hives, but I was working for a global patient advocacy organization that included CU in its scope of work. When I mentioned to my CEO that I was a CU patient in remission, it turned into an even better partnership. Together with two other dedicated colleagues, we started an organization called We CU, to support people in the U.S. who have chronic hives.
The name says it all. If you’re experiencing CU, we do see you. It’s a gift to meet other people in similar situations and to offer real hope for relief. I know the frustration of feeling desperate and beyond help. I’m incredibly grateful my itching, pain and swelling have stopped, and I’m also very grateful to have found the true, lasting support of a community where people with CU can share our challenges, successes and, most of all, hope.
Resources
This educational resource was created with support from Regeneron and Sanofi.
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