The Chronic Autoimmune Condition You’ve Never Heard Of — But I Live With Every Day

Emmeka is a 28-year-old Iowa-based social media manager and beauty content creator, who began to experience recurring hives five years ago and was eventually diagnosed with chronic spontaneous urticaria (CSU), an autoimmune condition that’s characterized by hives and/or deep swelling for more than 6 weeks without a known allergy or external trigger. In this personal essay, as told to Andrea Cheng, she opens up about her journey with the disease, from learning how to manage her symptoms to finally coming to terms with her condition.

Even after 5 years, it’s difficult to explain what living with chronic spontaneous urticaria or CSU is like. It causes a tingly itch that travels from one part of my body to another, it’s overstimulating, and it makes it almost impossible for me to focus on anything else. Scratching just exacerbates the hives, so all I can do is wait for them to go away. 

The first time I broke out in hives, I had just finished my evening shower when I noticed these red, itchy welts all over my back. My partner applied anti-itch cream, which worked…for about 15 minutes before they returned. I spent the entire night researching 1) what they were and 2) what triggered them. I had never experienced hives before and thought it might be an allergic reaction, but as far as I knew, I wasn’t allergic to anything. 

From that day onwards, my hives just kept coming back. I would experience flare-ups several times a week, out of the blue, starting on my back before spreading to my arms, chest, and legs. This was in 2020, at the height of the pandemic, so I made some telehealth appointments, but I came away frustrated.      

For the next year and a half, my life was a blur of confusion, anxiety, and endless spiraling. I cut out dairy, hoping that would help — it didn’t. I would track everything I ate to see if there were any patterns. Then I went down the list of any other possible triggers — skincare, makeup, detergents, body wash — and threw them away.  I thought maybe it was an environmental allergy or the heat, so I started limiting my time outside.  At one point, I even wondered if it was something in my water, and I put a filter in my shower. It was exhausting. 

When I was finally able to see a new primary care doctor, they diagnosed me with CSU or chronic hives without a known allergy or external trigger. When I heard that, I felt disappointed. While I was glad to finally put a name to what I had been experiencing, I thought that a diagnosis would come with more answers. I was still searching for a trigger; initially, it didn’t really click that this was an autoimmune condition out of my control.

Last year, I connected with Dr. Payel Gupta, a New York City-based allergist (but not my allergist) about the signs and symptoms of CSU and the true impact this disease can have on patients. In Dr. Gupta’s experience of treating CSU patients, a flare-up can be like “having hundreds of mosquito bites all over your body; CSU isn’t a regular itch; it’s an intense itch you can’t ignore. It can cause poor sleep, social isolation, and difficulty with relationships.” 

Even though CSU may not be ‘life-threatening,’ Dr. Gupta recognizes that it can still have a significant effect on patients. “We’re starting to see data on the toll it can take on your mental health. It can be a significant burden,” says Dr. Gupta.

At the time of my diagnosis, my doctor recommended that I simply continue to take antihistamines and told me my symptoms would likely go away on their own in a few years. Looking back, I wish I had been more vocal about how much CSU was disrupting my everyday life. 

“CSU is a challenging disease because of its chronic, spontaneous, and unpredictable nature. There’s no specific trigger, so even if we put a person with CSU in a bubble and didn’t expose them to external factors, they would still experience a flare-up,” says Dr. Gupta, who sees patients with CSU on a daily basis. “So, rather than documenting what you ate or wore before a flare-up, what you can do is document how it’s impacting your life, any lifestyle changes you’ve tried, and talk to your doctor. You don’t have to simply live with chronic hives — ask for their help in finding relief, and don’t hesitate to seek a second opinion, if needed.” 

A few months later, it finally dawned on me that there was nothing *I* did to make my hives occur. It was absolutely freeing; it was like a weight was lifted off my shoulders. Most importantly, I realized I didn’t have to be afraid of causing this to myself, and I could do the things I loved again. I reintroduced dairy into my life. I went to restaurants. I decided to go outside without overthinking it. Despite the potential of unpredictable flare-ups, I decided to have fun again. 

Instead of searching for triggers, I continued to lean on my support system, like my significant other who provides emotional support and makes sure that I have antihistamines on hand to help with the symptoms. My family has taken a proactive approach: they do research, they suggest ways to help alleviate stress, they make sure I take care of myself. And my friends are the ones who lend their ears every time I need to vent. But it was the online community and resources, like Never Just Hives, where I found the validation I needed and connected with others who have had a similar experience. 

One thing I realized through this journey is that there weren’t a lot of pictures online of what hives look like on darker skin, like mine. There wasn’t a whole lot of video content either, so I began sharing my story on my beauty content platform. Once I opened up about my experience, I started to receive comments from people who were going through a similar journey. I used to keep my condition close to my chest — only sharing with my inner circle — but as it turns out, there’s something so beautiful, even comforting, about talking to others about CSU. It makes me feel less alone, and that’s the main reason I’m so open about it now. I’m still working through my CSU journey. I don’t have it all figured out (even though I wish I did). I still have flare-ups. But now, I don’t let CSU control my life anymore.