A New Role: A Young RA Advocate Makes Her Mark

An actress shares her person­al journey with rheumatoid arthritis to offer the comfort of community to other patients.

By Diana Price

To fans following actress Megan Park’s career tra­jectory since she gained promi­nence in Hollywood through her por­trayal of cheerleader Grace Bowman on ABC Family’s The Secret Life of an American Teenager, the sailing has looked pretty smooth. Park, 28, spent six seasons on the show, which was her most significant role after smaller parts in television and film; and in the two years since the show’s final episode, she has been working consistently, including a role in the upcoming movie Room.

But what fans have not seen through the years of Park’s work and resulting success is the daily challenge she faces in living with rheumatoid arthritis (RA), a chron­ic, debilitating autoimmune disease. The disease causes inflammation in the lining of the joints (synovial membrane), which can lead to the breakdown of cartilage and sub­sequent bone and joint deformity. Fatigue as well as pain, redness, and swelling in affected joints are the most common symptoms.

“I’ve had RA for about a decade,” Park says. “I’ve lived with the disease my entire adult life.” In fact, Park was initially diagnosed with juvenile arthritis as a teenager after experiencing symptoms that included aching, swelling joints; she was rediagnosed with RA at 18. “RA can be an interesting disease to diagnose,” Park says, “because there’s not really one test to confirm the disease, so my diagnosis was a bit of a process.”

In the years since, Park says, she has undergone a wide range of treatments, both medical and com­plementary, to help manage the dif­ficult symptoms of RA. “I’ve done it all,” she says: “Daily medication for a while, lots of physical therapy, diet and exercise modification—I’ve tried it all.” Each approach offered varying degrees of relief, she says, emphasizing that “treating RA is so individual—what works for some people doesn’t work for others, and management definitely varies based on what my symptoms are on any given day.”

Each morning, Park says, she wakes up and takes an inventory of her body: “Every single day when I wake up, I lie in bed and ask: How am I feeling today? How are my joints feeling today?” That mental check-in is so important, she says, because “the disease is really unpre­dictable and changes so much; you can have flares that make you feel terrible one day, and then you can wake up and feel good the next day. Constantly checking in and assess­ing how you’re feeling and what you’re capable of that day is key.”

Coping with varying symptoms can be tough, Park says, but she feels grateful that the disease has not affected her ability to pursue her career. “I’ve been very fortunate that it hasn’t hindered me from work­ing—I’ve been able to do whatever I’ve wanted to do.” In fact, Park says, if anything, living with RA has added another dimension to her ability to inhabit different charac­ters in her acting: “I think that it has made me more empathetic toward people’s individual plights, and that has helped me as an actor. When I’m reading about characters who are going through something that might not make sense to the people around them, I’ve had a head start in my ability to understand their view. I think it has helped me as an artist.”

But she acknowledges that the empathy she has gained through her own challenges is not always evident in the responses from others who don’t understand the impact of the disease. It can be hard to explain, Park says, when she needs to change her schedule or cancel plans because she is experiencing a flare. “You’re constantly catching up the people around you based on how you feel,” she says. “I may have to say, ‘You know what? I’m not feeling good today, and I can’t do what we planned, even though I said I could yesterday.’”

The lack of awareness and edu­cation about RA, she says, means that sharing your experience and trying to explain the reality of your symptoms can make you feel isolat­ed. This can be especially true for young people living with RA, in light of the widespread mispercep­tion about RA’s being a disease that affects only older people.

For this reason, Park says, con­necting with other young people who have RA can be an important source of support. “It’s so good for your mental health to not feel alone when you’re living with RA because sometimes you can feel crazy. Your joints might feel fine one day, and the next day you feel like you’ve been hit by a truck.” Sharing your challenges with others who live that experience and creating community can be invaluable in managing the disease, Park says: “If I’m talking to a friend who has RA, I can just say, ‘You know, it’s one of those days,’ and they completely understand.”

To help other RA patients find that support, Park has recently partnered with Joint Decisions, an educational initiative developed by Janssen Biotech and CreakyJoints, which aims to provide resources and create community for people living with RA, empowering them to get support and good medical care. Park participated in a video chat with the program to describe her experiences with RA, and she hopes that sharing her story pub­licly will help educate people about the disease and provide inspiration for other young people who may feel isolated in their life with RA. (Visit JointDecisions.com to view a recording of the video chat and other resources for those living with RA.)

As she moves forward in her busy career and her public role as an RA advocate, Park says she is optimistic about her ability to balance all the parts she plays—actor, patient, and advocate: “I try not to think about the future with my disease too much; I take it one day at a time. I try hard to be careful with my body now so that I’m able to continue doing what I can.”

A conversation with Park makes it clear that this is one young RA patient who is not allowing RA to define her life but rather is tak­ing the lessons of her experience to broaden education about the dis­ease and increase understanding. “Many of the 1.5 million people liv­ing with RA in the US are young,” Park says, “and you would look at them and think that everything is fine, but that doesn’t mean that they are. Remember that everyone you encounter can be dealing with a per­sonal struggle; and even if it doesn’t make sense to you, it doesn’t mean it’s not very real for them.”