Advocacy, Candor, and Misdiagnosis: Nika C. Beamon

Nika C. Beamon is a professional powerhouse, with a frank personality to match. She’s a journalist by trade, dedicating over half of her life to producing and writing for news outlets; she’s also published two books, one of which is a memoir that explores her (mis)diagnosis experiences with IgG4-RD.

Nika’s symptoms began when she was a 19-year-old double major at Boston College, playing sports and modeling in her limited free time. When she sought help for the fatigue, joint pain, and spontaneous fevers, they were first assumed to be mono (until the test came back negative), then a result of her busy lifestyle (but not even quitting activities could keep the fatigue at bay).

Doctors also assumed Nika’s symptoms were related to undiagnosed conditions that can be common in African Americans, like lupus or multiple sclerosis or rheumatoid arthritis, yet not a single test confirmed their assumptions.

This type of symptom-centric care continued for years.

“Every time I got sick, they treated the symptoms they saw. I got pancreatitis and they addressed it. Having trouble swallowing? Esophagitis, no problem, we’ll give you some anti inflammatories. Stomach’s swollen? We’ll fix that,” she said. “We just kept patching things up– every time we fixed one thing, something else broke.”

After a lymphoma scare led to two different lymphadenectomies, Nika knew that things had to change.

“I was barely thirty years old and they’re telling me that, whatever this is, it’s killing me. I didn’t want to die and I realized that nobody cares as much about your life as you,” she said. “This had already eaten my twenties, now it was trying to kill me in my thirties, so I might not see my forties. They hadn’t been able to get to the bottom of this, so I had to find someone who could.”

Inspired by the television show House, Nika put her journalism skills to use, researching every master diagnostician that she could find in the United States. This process led her to a doctor who she’s now been with for more than twenty years – the same doctor who diagnosed her with IgG4-RD, seventeen years after her symptoms first began.

“From the time I was twenty, when they first said it was autoimmune, I knew that they wouldn’t have a cure. But I was glad to have a name, glad to be able to look up treatments and clinical studies,”she said. “I never worried about whether I could be cured, and I didn’t even worry about how long I could live. I worried about how well I could live.”

Finally getting a name for her condition left Nika with a surprisingly positive mindset.

“I thought, ‘I need to get my stuff together so I can do all the things I want to do, so that I don’t have regrets in case this gets so bad that I can’t do them,’” she said. “Once I figured all of this out, I felt that it was my responsibility to tell other people so that somebody else doesn’t have to wait seventeen years.”

As impactful as this was, not everything can be changed by a mindset shift. See, doctors were unsure how pregnancy might impact Nika, especially as she entered her forties.  

“I always told people that I may not be able to have kids. And I always imagined that I would have children,” Nika said. “That will probably be the only and biggest regret that I have: That I wasn’t able to have children of my own.”

Later, after publishing a short article about her misdiagnosis journey, Nika began working on her memoir, Misdiagnosed: The Search for Dr. House. Albeit, reluctantly.

“I didn’t want to write this book at all. I write for a living, but I tell other people’s stories,” she said. “But I think you realize sometimes – if you don’t do it, who’s going to? And since I don’t really care what other people think, I figured I’m the right person to do it.”

Over time, Nika’s work expanded to include supporting the Autoimmune Association and speaking candidly about how the shift to remote work impacts people with chronic ‘invisible’ illnesses, especially in the wake of the COVID-19 pandemic.

“It was insulting to me to have to sort of beg for an accommodation when I’m doing the same job as everybody else, and just as well, I just do it from a different location,” she said. “I’d been working at the same place for fifteen years and I’d never told anybody that I had an autoimmune disorder. You cannot tell what somebody could possibly have just by looking at them.”

Today, at the age of 51, Nika is facing a knee replacement caused, at least in part, by years of uncontrolled inflammation coursing through her body. This particular surgery is pushing her to face the ways her life experiences are continuing to impact her care.

“I lost both of my parents in the last three years. Most of my life, I imagined that I would die first,” she said. “I was always used to them taking care of me, so now I have to come up with a new plan for how I get cared for when I can’t do things for myself. Replacing my knee is a big deal because I work, my husband works, we have a house with stairs, I can't go to my parents’ house anymore because we’re selling it – it’s a different life to have to come up with a new care circle to figure those things out.”

Through all of these challenges, Nika’s continued returning to a motto that carried her through those fatigue-filled undergraduate days, long before she’d heard of IgG4-RD.

“I have a Triple A plan for life,” she said.“You have to learn to accept where you are and who you are, then adapt to it so that you can achieve whatever you want.”