Nika C. Beamon shares how she balances a career in journalism with life as a person living with IgG4-RD. She discusses her diagnosis journey, the challenges of managing a chronic illness, and the importance of self-advocacy.
Transcript
Hi, my name is Nika C. Beamon. Or that’s how the world knows me, anyway. And I live with IgG4-RD. If you’ve never heard of it, you’re not the only one.
I had no idea what I had at all. And when they told me, I still didn’t know what I had. And I have been living with this since I was about 22 years old.
I am a TV news writer and producer in the No. 1 local station in the country, so that is what I do for a living. So every day I write for the noon, the 4, the 5, and the 6 p.m. newscast. So I am like your puppet master. I write the copy; the anchors read it. They always have the right to tweak it, but I write it first.
Every time I’ve gone to a doctor, they said the one thing that you should not do when you have a condition like IgG4, just about any other autoimmune disease, or, look, in life, is to have a stressful job.
I cannot possibly imagine maybe a more stressful job, other than, like, a firefighter or something, than the job that I have. I chose a career that I probably should not have chosen. Given that, because I do breaking news, we do breaking news, and that’s what we do.
And I have lived through Superstorm Sandy. I have lived through Columbine. I have lived through 9/11. Those were all of my job, and I have to show up every day. I’m expected to show up like everybody else. I was expected to stay three days when the Twin Towers fell down, and that’s just part of the job.
Is it good for my condition? Absolutely not. But it’s just a part of who I am because, again, I love writing, and so I write every day. And so that’s as much a part of me as this condition is. So I try to manage the stress as best I can, but this is probably not the best career for me.
So inside of work, all you can do is, you know, take your breaks, and I take what they call “Nika Fridays.” I take every other Friday off and use my own PTO to do that, so that I can give my body the rest that it needs when I feel like I’m becoming overwhelmed with stress.
But in terms of my writing, it didn’t really impact it for a very long time. Mostly because, like most people with an autoimmune disease, I told no one I had it, so it didn’t matter what I was going through.
Even when I went through the surgery, they thought I had cancer. I said nothing. I used my own time. I tried to make it so that my condition wasn’t their burden, and so there was no excuse to not promote me or to allow me to do certain assignments. So I said nothing.
But what happened was, after the cancer scare, my coworker finally asked, like, “What is going on?”
I said, “This is what’s going on, this is what has been going on.”
And she said, “Oh my God, you’ve got to share your story, we’re journalists. How could you not say something?”
And I said, “Look, I don’t want people, you know, looking at me differently or treating me differently because this is part of who I am.”
And she said, “Well, you know what, then don’t tell us, but you can enter this contest.” And there was a contest in The Huffington Post run by Rita Wilson, Tom Hanks’ wife, and she’s a celebrity in her own right. And it was about survival stories. And so I said, “Well, if I could bang something out when I get home, I’ll do it.”
And I did, and she picked it, and they were about to publish it. And so I went to my boss and said, “Oh, I’m going to have to tell you something, because tomorrow these people are going to see it because somebody’s going to get that paper and see it.” And so I sent a mass email to the company and to everybody in my division with a link to the article, and they all got to read it. And it was the first time that many of them had ever heard of it.
And from that point, my coworker said, “Now you’ve written the article, you see how people are interested. Now you need to write a book about it.”
And so I wrote my memoir about finding Dr. House. In my search for the perfect doctor for me, we were looking for this so-called fictitious Dr. House. And so I ended up naming the book that, trying to figure out what kind of doctor treats somebody who has symptoms, but nobody can put the puzzle together.
And so I ended up writing my memoir. And what made that an amazing thing to write was I, you know, you reach out to people for blurbs, and I reached out to people like Gov. Wes Moore. At the time, he was just the author who wrote “The Other Wes Moore,” and he wrote a blurb for it, and he has never met me.
I reached out to Bernie Mac’s wife. He had sarcoidosis, and she was a nurse, and she treated him, and he had a hard time getting a diagnosis, and she wrote the foreword. We still never met.
I was amazed and saddened by the fact that I could reach out to all these people and find out how many of them were touched by other people who had autoimmune diseases, and they sort of jumped at the chance to write this blurb for somebody they had never met.
After the book came out, I started writing my blog because I was like, “You know what? My friends don’t even know what it’s like to live like this every day. They don’t know how much money I spend or how much time it takes, or why I never go on vacation because I use all my PTO to pay for doctor’s appointments or days off. And so when am I going on vacation, then?”
All of those things, I realized that once people read the book, they had these questions, and I was like, somebody should probably answer their questions, and especially about an invisible illness, because I’ve had a lot of surgeries and procedures, 36 of them. But most of the scars are under here. And I got a couple now. I got a brand-new one here, but most of them are underneath all of this. And so they’ve never seen them, and so to them, it’s not real.
So it’s amazing to me what people think a sick person should look like or behave like, because they don’t see the days when you can’t get out of bed. They don’t see the days when you’re struggling to find your medication. They don’t see the days where you’re looking at statements going, “How am I going to pay for this surgery?” They don’t see those, and I think that they should.
And so I started blogging so that they could see that these are real people who have real issues. No matter who you are, where you live, or how much money you make or what your career happens to be, it can impact you.
I think, you know, what’s interesting about trying to build a career when you’re chronically ill is you have to think about things other people don’t. You do lose the ability, in a lot of cases, and the world is going this way, to be freelance, because you need health insurance.
That’s the first thing you need. Health insurance, and good health insurance, is the best thing you could secure for yourself when you’re looking for a career.
You’re looking for a career that offers you the flexibility to take Nika Fridays, to take, you know, to have more paid time off. That’s, you know, more understanding of the fact that you may need some sort of accommodation.
It’s also to make sure you assemble a good team of doctors so that if you require an accommodation or you need those things, that your team is ready to back you up and provide you with the documentation or the help that you need to secure those things. Those things are very important.
But most importantly, you never look at your condition as, again, the whole part of who you are. It is just a part of who you are. And so you still go after the same dreams. You still do the same things, but you position yourself in a city that may have doctors that know more about your condition than other places. You don’t want to be in an area where you cannot get the help you need.
You want to position yourself in a place where you have a support system so that if you need help getting places or doing things, even getting to work, that you have friends or family who can help you do those things.
You want to position yourself in a place where you’re constantly doing research to reduce your costs, looking up drugs and all of those things so that you’re not, you know, limited to the job you can take because it’s not paying enough. So you’ve got to sign up for GoodRx. And all the you’ve got to write to the pharmaceutical companies to ask for discounts.
You’ve got to, you know, you’ve got to sort of be, again, as people always say, your own best advocate. You’ve always got to be looking for the angles that will make your life easier.