No One Believes I Have Rheumatoid Arthritis
Three RA patients who defy the disease’s typical demographics share their journeys.by Beth Shapouri Health Writer
The first time his doctor told him he had rheumatoid arthritis, Mark D. Rucker, 52, a busy attorney and Iron Man participant from Lexington, KY, was stunned. “When I thought of arthritis, I envisioned my grandmother.” It’s true that women are two to three times more likely to get the autoimmune disease, and that the likelihood increases with age, according to the CDC—but it’s also true that the RA community overall is incredibly diverse.
Anca Askance, M.D., director of rheumatology clinical trials at Columbia University Irving Medical Center in New York City, has seen how the misconception that it’s only seen in elderly ladies impacts patients. She insists, “Men, young people, healthy-looking individuals, and minorities are under-represented. Not only can this delay diagnosis as the patients themselves may not seek treatment, but it also inhibits their inclusion in research, and makes understanding the therapeutic options more difficult for these groups.” Plus, there are the psychological benefits for patients to simply know they’re not alone and that there are other people in the world sharing their struggles.
Here, three RA patients who constantly get reactions of surprise when they disclose their diagnosis open up about their experiences with rheumatoid arthritis—and what they wished people knew about what it’s like for them living with the condition.
RA Warrior: Kaia Powell, 27, Chicago
Q: How did you find out you had RA?
A: “I self-diagnosed in 2014 by going to Dr. Google to find a reason for the pain in my hand. I was definitely surprised—it doesn't run in my family, and I thought it only happens in old age. But I went to a doctor and said, ‘These are my symptoms, can you do a blood test for rheumatoid arthritis?’ It came back positive. Mine’s a severe case— it started in one finger but now it’s in both hands, plus it’s gone to my jaw, and in 2018 it got so bad I had nodules on my lungs, which put me down for a month.”
Q: You’re really active on social media in the RA community. Why is that important to you?
A: “I wanted to find people like myself who are going through something similar. And now it's opening up—there have been a lot of young people and people of color have been reaching out and following me. It’s so important, especially for people of color, who can be more dismissed. But the pain is real.”
Q: How do you stay positive?
A: “I try to take it day by day. I love to travel, I like zip lining, rock climbing, and I don’t want to give all that up. I'm trying to be patient with myself and just do what I can. I might have one bad day, but then I will have three good days.”
Q: What do you want people to know about living with the condition?
A: “Usually when people think ‘handicapped,’ they think somebody in a wheelchair, somebody with a cane, not someone like me. But I have joint deformities in two fingers of both my hands, joint narrowing, and erosion as well. It's harder for me to do simple things like squeeze bottles and open doors.
“And this is an unpredictable disease. One day I’m up and running, being my best self. And the next day, I'm down. People may see that and think, ‘Oh, she's faking it.’ If everyone was educated about it, that would be a great thing.”
RA Warrior: Hannah Brennan, 24, Toronto, Canada
Q: How has RA presented itself for you?
A: “I was diagnosed at the age of seven after a hornet stung one of my finger joints, triggering many, many flares. As a kid, I would whack something, and it would start just swell like crazy. We treated it through cortisone injections until I was 17. Until then I would get about two flares a year in my ankles, hips, knees, and wrists, but they tapered off.
“My jaw was a whole other thing—it started as a typical sort of joint pain with calcification, but over time, it was so bad that part fused to my skull. It was terrible, I had to take really small bites of food. Then two years ago I had a bilateral TMJ replacement—I’ve still got a little numbness in my face from that, but I can open my mouth so I don’t care!”
Q: What’s it like to be so young and have the disease?
A: “Growing up, kids my age understood—it was the adults and teachers who didn't! Now sometimes my peers who are used to me mostly being fine don’t get it. They’ll say, ‘But you were fine the other day!’ They struggle to adjust their understanding. That can be frustrating.”
Q: What would you say to folks out there hearing your story?
A: “Patients think ‘I have arthritis, well, there goes my life,’ but it’s not the end of the world. I was still able to run a marathon last year. Yes, RA is something that can be incredibly hard to live with, but it's also something that you can choose to make the most of.”
RA Warrior: Mark D. Rucker, 52, Lexington, KY
Q: How did your diagnosis come about?
A: “In 2015 I first noticed pain in my left wrist. It got to the point where I was at a soccer game for my daughter, and I couldn't clap. Then I noticed that there were some red patches on my skin that were really hot to the touch [something called RA rash]. Thinking I had a staph infection, I went to the ER where the doctor told me it was RA. I was absolutely floored by that. I just never thought in a million years that that would be something that happened to me.”
Q: How have you managed it?
A: “I began taking medicine injections twice a month to deal with it, but then I made some nutritional changes [to reduce inflammation]. I cut out a lot of processed sugars and cut back on caffeine. I switched my job to lessen stress, opting for a different type of real estate law where I'm not under as many deadlines. It really helped—I haven't I haven't been on medicine now for almost a year.”
Q: What’s frustrating about being a man with RA?
A: “I'm a big guy, people just look at me and expect me to be able to do things, lift things. When I was getting more flares, I felt people were looking at me and judging me for moving slow or walking funny because of my painful joints. That’s why they call it an invisible disease. People just expect, ‘well, you look fine, what's wrong?’”
Q: While you’re an attorney, you’re also an athlete, having participated in Iron Man Challenges. How has it impacted that hobby?
A: “At first onset, I had problems with my shoulders and elbows, so I wasn't able to swim. Now I can pretty much do everything I did before except run, which I never enjoyed anyway. Somebody said once to me, ‘if you rest, you rust’ so I’m going to keep active and moving.”
Rheumatoid Arthritis Overview: Centers for Disease Control and Prevention. (2020). “Rheumatoid Arthritis.” cdc.gov/arthritis/basics/rheumatoid-arthritis.html