Living With Rheumatoid Arthritis: Fashion Designer Michael Kuluva Copes by Getting Creative
Key takeaways:
Michael Kuluva was 28 when he was diagnosed with rheumatoid arthritis.
It didn’t stop his star from rising as a fashion designer.
He has used his creativity to cope and has become an advocate for other people with creaky joints.
Once a professional ice skater, Michael Kuluva was a rising fashion designer — and just 28 — when he was diagnosed with rheumatoid arthritis (RA).
But that didn’t stop him from making headlines in the fashion press the next year, when Michael took his bold, video-game-inspired designs to the red carpet for New York Fashion Week in 2012. Attention and praise for his creative fashions have grown ever since, including a 2021 collaboration with actor Tara Reid.
As his star has risen, Michael has also increasingly spoken out on behalf of those living with rheumatoid arthritis. In his work and on the runway, he makes a point of including people with mobility challenges. Now 38, the millennial fashion designer is self-confident, creative, and in charge of his own destiny. Not only does he cope with his rheumatic arthritis, he takes inspiration from it in his creative life.
Getting — and facing up to — a diagnosis of rheumatoid arthritis
Michael’s path to diagnosis wasn’t an easy road. He was a busy, always-working design student in his final year of school when he started feeling troubling back pain. At first, he thought he might be experiencing kidney stones, he says. His specialist suspected arthritis and referred him to a rheumatologist — a doctor who treats autoimmune disorders.
Michael says, “My body lit up like a Christmas tree with their testing,” which showed inflammation throughout his body. He was first diagnosed with psoriatic arthritis; then, he had a bad reaction to his prescribed medication. Other specialists determined that Michael was instead experiencing rheumatoid arthritis (RA) and fibromyalgia.
One of the early things he did was go online to learn more about his condition. But Michael says he wasn’t reassured by some of the scary information he found.
He didn’t go public about his rheumatoid arthritis right away, either — not until about 5 years after his diagnosis. “I was scared to, at first, even admit that I had arthritis,” he says. “Because I had such big contracts with major companies, I was afraid that they would think I was incapable.”
He kept working, though, following specialists’ advice on a self-care routine and pushing onward with his fashion company, Tumbler & Tipsy. He’s now taken part in 10 New York Fashion Week appearances.
Helping build a rheumatoid arthritis community
In the 10 years since Michael’s diagnosis, he says more information has become easily available for those experiencing rheumatoid arthritis, and there is better public understanding of the condition. Michael has helped make that change, both as an advocate and a fashion designer.
Rather than hide his experience with rheumatoid arthritis, he speaks out on social media. He regularly joins in on #creakychats on Twitter as a core member of CreakyJoints, an online community for people with arthritis and related conditions.
“Our community has evolved so much,” he says. “We are a big force to be reckoned with, especially on social media.”
With his fashion line, Michael includes people experiencing RA and makes his clothing accessible and easy to wear. On Tumbler & Tipsy’s trendy, online-only red carpet this year, one model wears a T-shirt that says, “Arthritis Doesn’t Take A Day Off.” Another strikes a pose from their wheelchair.
It’s part of a growing trend in fashion and culture to include all kinds of people, including those who live with rheumatoid arthritis.
“There's a lot of new and up-and-coming advocates that I see a lot being the face of arthritis now,” Michael says. “I'm on the ads. We're seeing men, gay men, we're seeing it. We're seeing different races. Everybody's involved. And I really like the inclusivity of what's happening.”
Keeping arthritis in check with healthy routines
Rheumatoid arthritis is an autoimmune disorder that causes your immune system to damage tissues in the body, particularly in joints of the hands, wrists, and knees, but also of the hips, spine, shoulders, and elbows. It causes pain and stiffness and can spread or become more serious over time. More than 1.3 million adults in the U.S. live with RA.
In 2018, Michael made a video with GoodRx’s HealthiNation to share his tips for coping with RA. He advises to:
Exercise daily, using a low-impact routine
Follow a healthy diet — one high in protein and vegetables
Drink plenty of water, and skip sugary drinks
Manage stress by enjoying the companionship of your dog and enjoying other comforting activities
Today, his top recommendation is to work closely with a doctor you trust. “Going to see your rheumatologist, getting a great relationship with them, is No. 1,” he says.
The next is to stick to the daily, healthy routine recommended for you. “Just having a daily routine, you know, getting your steps, and drinking enough water. Getting the sleep that you need and taking your medicine at the right times of the day,” he says. “That was the biggest thing for me.”
“I don't do a lot of elliptical or running. I do a lot of walking, fast-paced walking, on the treadmill or outside. I'll do about 4 to 5 miles a day, 10,000 to 12,000 steps. If I can go more than 10,000, amazing!”
Being part of a community is self-care
Today, Michael Kuluva is an influencer in the best sense: He’s an activist and role model for young — and not-so-young — people living with arthritis, showing that people with RA can be active and included.
“I’ve always wanted to use my platform to help people,” Michael says. “I just try to keep it optimistic, because there's just too much negativity in the world already.”
“Knowledge is power,” Michael says.
Establishing a good relationship with your medical provider is one way to get educated about your RA. Connecting with others online and building community is another.
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