3 Helpful Tips If You’re In A “Bad Relationship” With Your Autoimmune Condition

A tingle that turns into an itch that only becomes worse as you scratch it. A feeling that may resemble mosquito bites all over your body. Trouble sleeping, work disruptions, and skipped social events spurred by the anxiety of the hives returning. That’s what flare-ups can be like for people living with chronic spontaneous urticaria (CSU) — an immune-mediated disease characterized by hives and/or deep swelling for more than 6 weeks without a known allergy or external triggers.

When Emmeka, an Iowa-based social media manager and beauty content creator, first noticed itchy, red, welt-like bumps across her back, she worried she was experiencing an allergic reaction. For months, she tried to rule out what might be causing symptoms and considered everything from laundry detergent and beauty products to the food she was eating. “I was continuously trying to figure out what was happening to me and editing my lifestyle to avoid potential triggers; it was a burden,” Emmeka recalls. After a long journey of trying to get to the root cause of her persistent hives, she finally got a diagnosis of CSU.

Living with CSU can feel like being in a bad relationship: compromising, downplaying your needs, and feeling stuck in a cycle of discomfort and frustration.

Dr. Payel Gupta, a New York City–based allergist who treats people with CSU, is working to raise awareness of this condition and empower patients to find solutions that work for them. “Living with CSU shouldn’t mean settling for discomfort,” says Dr. Gupta. “CSU is something you and your doctor can work on together. It’s a partnership, and that means good communication about what’s working, what’s not working, so we can find the right management plan.”

Dr. Gupta and Emmeka recently sat down together to discuss what it means to  be proactive in taking more control of your life with CSU and shared key tips for improving your “relationship” with this chronic condition.

Keep reading for Dr. Gupta’s advice on how to get a better sense of control in your journey with CSU. 

It took Emmeka 2 years to receive her CSU diagnosis — a delay that’s all too common, as the average time to diagnosis for CSU is over 2 years. Dr. Gupta recommends that patients presenting with symptoms of CSU connect with a specialist, such as an allergist or dermatologist, who is familiar with CSU and the standard diagnostic and treatment protocols for this condition.

“They’ll help you develop a concrete plan of action for when you’re having an acute episode, so that you don’t feel lost or confused and end up needing to seek urgent care,” Dr. Gupta continues. “Seeing a specialist can be a really important step toward getting the help you need to manage this condition in the long term.” 

It’s also important that you feel like you can fully open up to your health care provider. “You want to have good communication on both sides. So, if you feel like you’re not being heard or like you’re unable to express yourself, then it’s important to get a second opinion to make sure your concerns can be addressed,” Dr. Gupta says.

After coming to terms with her CSU, Emmeka decided to share her journey online and was met with support and stories from her online community, empowering her to use her platform as a content creator to raise awareness. 

“Community is really important because it reminds you that you’re not alone,” says Dr. Gupta. “Seeing your lived experience mirrored in others helps you feel validated and understood.” 

Social media, in particular, can be a valuable space for connection. But Dr. Gupta warns about relying too heavily on advice from non-medical sources: “Use social media for community, but when seeking information, turn to qualified medical professionals and resources based on reputable references, like Never Just Hives.”

“The biggest misconception is that there’s an allergic trigger,” Dr. Gupta explains. “Some patients blame themselves, thinking their actions caused the symptoms. But the truth is, you’ve done nothing wrong.”

CSU isn’t triggered by external factors like allergies, foods, or environmental irritants. Instead, it’s caused by an overactive immune system. For many patients like Emmeka, the spontaneous nature of this condition can be hard to come to terms with. But listening to your body is a powerful first step. 

If you can’t identify a specific trigger, it could be a sign that something else deeper is going on, like CSU. 

Dr. Gupta encourages patients to stay connected to their bodies by tracking symptoms and taking photos during flare-ups. This can help facilitate productive conversations with your doctor, and enable you both to work together to find a path forward.