Exploring women’s arthritis issues and needs

Everyday Health features Cheryl Koehn and her life with rheumatoid arthritis

Everyday Health featured an article about Cheryl Koehn, Founder and President of Arthritis Consumer Experts. In the article, Cheryl Koehn shares her story to help others with RA learn from the mistakes she made, such as missed symptoms, diagnosis denial, and treatment delays. Below is an excerpt of the Everyday Health feature:

What Rheumatoid Arthritis Taught an Olympic Volleyball Player

Picture of rheumatoid arthritis advocate Cheryl Koehn

Cheryl Koehn, with Molly, an Australian Labradoodle, started Arthritis Consumer Experts to help improve RA education.

 

Is denial a common response to a rheumatic disease diagnosis? Cheryl Koehn will be the first person to tell you that she had trouble accepting her diagnosis of rheumatoid arthritis (RA). After all, as a teenager, she was already an elite volleyball player, competing with the U.S. Junior National Team. She earned a four-year scholarship at the University of Washington in Seattle. But by age 27, just a few years after playing a competitive sport at a high level, she needed to sit in the handicapped seat on the bus to get to work. “The toughest part of accepting it,” Koehn says, “was that when I began to look into the disease, I didn’t see anyone like me.”

The Lack of Arthritis Education and Awareness

It was this experience that led Koehn to create Arthritis Consumer Experts, a Vancouver-based organization dedicated to helping those with arthritis to increase their health literacy and to understand what they are facing. “I put off treatment for about a year after my diagnosis,” Koehn says. “If my health literacy were much higher then, I probably would have made different choices.”

Pushing Her Limits

Koehn’s athletic experience, in some ways, worked against her when initially dealing with RA. She was accustomed to pushing her body to the limit. “When I was selected for the U.S. Junior National Team, we were the first group of athletes that moved to the Olympic Training Center in Colorado Springs in 1978. They used to put us through oxygen deprivation exercises. The science was very early, but we were already doing cross training and other things athletes still do today. The altitude was challenging. Colorado Springs is higher than Denver, which is a mile high. There was a school of thought that we weren’t doing as well as the teams that were training in Mexico City and higher-altitude locations.”

A Break From Playing Volleyball

When the United States boycotted the 1980 Olympic Games in Moscow, Koehn, having just finished high school, decided to accept a full scholarship at the University of Washington. “I had been training nonstop and wanted to do something different,” she says. “My parents didn’t have tons of money. I had always intended to go back to playing for the 1984 Olympics, but once I left, I never looked back. It was the right decision for me.”

A History of Injury

Koehn can clearly remember the play that still affects her health to this day. “I was going for a ball from the back line, and my teammate peeled off the net to chase the same ball. She was a big girl, taller and heavier than I was, so I put on the brakes and I tore my medial meniscus. Back in the day, we didn’t know that it was better to leave the meniscus in than take it out. The treatment back then [the early ’80s] was to remove the whole structure from the leg with open surgery. So by the time I was 25, I had a pretty good case of osteoarthritis.”

Wear-and-Tear Osteoarthritis vs. RA

It was this osteoarthritis that helped mask what was really happening to Koehn. “A year or two before I was diagnosed with RA, that knee would swell up to the size of a kid’s soccer ball,” she says. “I just attributed it to the injury, poor rehab, or even a repair job that wasn’t good enough. But what happened to me is what happens to a lot of athletes: You get shipped off to an orthopedic surgeon when you should be going to see a rheumatologist — a specialist that is highly trained. That’s how my disease appeared. Osteoarthritis didn’t necessarily have those huge levels of inflammation. It looked as if somebody put a bicycle pump to my knee and blew it up.”

Early Symptoms That Went Unnoticed

The warning signs kept occurring, but Koehn wasn’t aware of them. “I remember driving down to the 1984 Olympics to see my girlfriends compete,” she says. “I drove back up to Vancouver with my mother, and when we stopped along the way, I developed shingles on the back of my neck — not uncommon for a person with RA. When I got home, I started having severe neck pains. I would bawl my eyes out in pain. But still, I thought these were injuries, holdovers from my athletic career. Only when I started having pain in my foot and my index finger did I know something was wrong. I never had injuries there before. I couldn’t blame those pains on being an athlete. And, you realize, some people don’t even have those clues. They struggle and struggle, and they’re told it’s all in their head. You have a serious autoimmune disease, and the doctor tells you it’s all in your head. No one will believe you, because your symptoms wax and wane. It’s like going to the mechanic and saying, ‘I swear, the car was banging yesterday! I don’t know why it isn’t today!’”

A Family Doctor’s RA Diagnosis

Koehn’s family doctor diagnosed her correctly right away. “I was lucky,” she says. “Most doctors only get about 17 hours of training in their entire medical schooling on RA. My family doctor was a young woman. She said, ‘Cheryl, given your age, I think you have arthritis.’ She figured it out pretty quickly and referred me to a rheumatologist, but I didn’t listen. I was an athlete. I told myself that I could win. I could beat this.”

Extreme Icing to Relieve Morning Stiffness and Swelling

Koehn, married to her first husband, was working as marketing director of a small interior design firm at the time. “Every morning, my ankles and feet were horrible,” she says. “I woke up an hour and half early, just to get on the bus and get to work. My husband got a bucket of ice and helped make my feet numb enough so that I could stand in the shower. Then we did that with my knees, or my wrists, whatever was giving me trouble. Then, when I would get on the bus, people would stare at me, like, why are you, a 28-year-old woman, sitting in the handicapped seat? Why are you asking someone to get up when you can just hang on to the bar? Well I couldn’t even come half way to closing a grip on the bar.”

Attempts at Alternative Treatment

Koehn tried naturopathy and acupuncture in an effort to tame her symptoms. “If you can get RA treated within six weeks time, you can basically put it into remission with drug therapy and other types of therapy, exercise being key among them.” Koehn says. “But I didn’t listen to the rheumatologist. I thought I could just change my diet. I tried everything known to nature’s kind, until I was wheelchair bound.”

Accepting the Diagnosis, and Finally, Treatment

The experience experimenting with nontraditional therapies has helped fuel Koehn’s mission to educate people with the disease. “The questions we urge patients to ask now are questions I wish I had asked then. How many people are you currently treating with RA? What kind of treatments are you using? What are the success rates of these treatments?”

For Koehn, the toughest part about the first year, even beyond the pain, was acceptance. “I looked at myself in the mirror at an acupuncturist, where I had over 100 needles stuck in me, and I thought to myself, ‘This isn’t working. My life isn’t worth living anymore.’ And I remember bawling my eyes out. I rapped on the door, told them to pull all the needles out and went home to make an appointment with the rheumatologist.

“I said thanks for hanging in with me; I’m ready to listen now. I get it, I have RA, and it’s not who I am,” Koehn says. “And that was a big part of turning the corner and accepting it. I’m still Cheryl, I still have a desire to win and to be athletic — now I have to figure out how to do it.”

Less Inflammation, More Energy: Treatment Improves Symptoms

Koehn started taking drugs to treat RA and they began to work for her. “I saw a slow improvement in the reduction of inflammation,” she says. “I had more energy throughout the day. Soon I started taking on a few new clients. I started to get involved in the arthritis community, because I couldn’t see anyone that looked like me looking back at me. I thought that was odd. It’s not a rare disease; it’s 1 in a 100 people. I thought we needed a group of people like me to band together to help each other. I formed Arthritis Consumer Experts, and 18 years later, we have 17,000 members. We work with researchers and find ways to support people living with all kinds of arthritis.”

Building a Much-Needed Support Network

The network Koehn has created is also a strong support system for those with arthritis. “One of the most important things in helping people is to see someone like you,” Koehn says. “When you can see someone living life, and doing it okay, and you can role model the disease, that person sees promise. I started to play tennis after I was diagnosed with RA. I looked for things that could fuel my competitive fire as an athlete, which still lives on in me. I can’t beat RA, but I can win at other things, while living with RA. Young people look for success. They want to know that there is light at the end of the tunnel, and when they see someone succeeding in living with it, it inspires them.”