Enemy Within: An interview with Karen Ager about Rheumatoid Arthritis

by Lene Andersen, MSW Patient Advocate

Born and raised in Australia. Spent two years as a "virtual prisoner" in a fourth floor walk-up living with her mother unable to walk. Nanny to a rock star's children. Survivor of an abusive relationship. Tireless advocate for RA. Teacher at the United Nation's International School in New York City. Happily married. All these are Karen Ager, but there's much more to her story.

Enemy Within, Karen's
memoir of her life with RA shares her psychological, physical and spiritual journey from early diagnosis to acceptance and advocacy. Karen has lived with RA for 30 years and in the book, she describes her life, exciting adventures, as well as the grimmer side of what RA can bring. Excerpts from her diaries and letters bring the story to life even more than her excellent prose. It is an inspiring read that creates the connection between the reader and the author of shared experiences, shared pain and shared growth.

Diagnosed at 17 with aggressive RA, Karen struggled with low self-esteem. Stuck in a relationship with an abusive boyfriend because she believed no other man could love her because of the disease, she ended up in the ICU with severe injuries. She lived through a horrendous flare at 24 that left her in a wheelchair, unable to walk or bathe herself. "When you see your body changing in front of you ... It's very painful as a 20-something-year-old to go through that. It truly, really devastates your self-esteem."

Karen hid her RA for many years, incorporating small tricks in her daily life to compensate, such as hiding her hands under the table when with others. "I didn't believe people would understand, didn't want to be defined by my illness ... It puts a lot of pressure on you," she says, but she continued hiding her RA, which was "a really destructive force in my body." At 28, her right hip was replaced - this was back in the days when hip replacements left you with a much
longer scar than it does now and once, on the beach in Australia, someone asked her if she'd been attacked by a shark!

Catalysts for Change

Karen experienced many losses due to the disease, including not being able to have children despite a long course of IVF treatments. However, she feels these losses have been made up for by gains in other areas, "but it took me a long time to get there." She believes that this personal growth is "related to gratitude, to redefining what happiness is and what success is," as well as being "satisfied with what I've got and not with what I don't have."

She recounts three primary catalysts for this change. The first was sitting in her wheelchair in a government office and being told that they would approve her for what is in Australia called "an invalid pension" because they didn't "believe she would ever work again." Being told that she couldn't motivated her to prove that she indeed could - she decided that "I have to have hope and became determined to get back on my feet." She sought more aggressive treatment with a rheumatologist and although it took her a long time to get back on her feet after the big flare, she eventually succeeded and went back to work.

The second catalyst for change happened during her time as a nanny to a rock star in Hollywood. She received news that a favorite student from her job as a teacher in Australia had died. Karen says that it "reevaluated my own values." The third catalyst was when she decided to move to New York and "had the courage to move to another country with the disease." This was also where she was first introduced to a biologic medication. During a flare and out of the medications she'd brought with her from Australia, she saw a rheumatologist who put her on Remicade. In her book, Karen describes waking up the next morning already feeling better.

Hope and Inspiration

Karen's experience with responding well to this new type of medication made her decide to be open about her RA and to begin to advocate for the cause. She started in Australia, working to bring Biologics to that country and continued her work in the US. Coming out about her disease "was liberating" - she discovered that "if people know, they'll help you." She is now open about RA at her school, holds an annual "PJ Day, which stands for Painful Joints Day where the kids wear pajamas to school" and mentioned that all the kids at the United Nations International School now know what RA is.

The Biologics brought personal change, as well. "For me, the psychological changes are enormous. When I got on my biologic, I felt like I could love someone properly because I could participate fully in the relationship - it changed every dimension of my life."

Today, Karen is on her third biologic. She quotes her doctor, saying "it's been difficult to find a treatment that is adequate and safe" for her. Her RA is "under control enough for me to work and function, not under control enough at the moment to stop all of the joint damage." When I asked if that scared her, she said "not as much as it used to, because I know there are other options now and I just have to do to make a decision about what medication I want to try. I'm not scared of the illness anymore because it's so much hope with the [biologic] medications."

It is this sense of hope that inspired her to write Enemy Within. Her "growing determination to become an advocate for others" continues to motivate her. Hearing from readers that the book helped them in their own journey has made her believe that her purpose in this life is "to be an advocate for others with RA" and to communicate the power of hope. In this way, Karen believes that her RA has been a gift, because it has allowed her to "reach out to others and make a difference."

Karen is giving away five (5)
copies of her book Enemy Within to our users and will help choose the winners. To enter, answer the following question in 200 words or less:

Karen mentions how RA both takes and gives. What has RA given you?

Leave your answer in the comments on this post before 6 PM EST, Sunday, May 22, 2011. The winners will be announced on Friday, May 27, 2011

Lene  Andersen, MSW
Meet Our Writer
Lene Andersen, MSW

Lene Andersen is an author, health and disability advocate, and photographer living in Toronto. Lene (pronounced Lena) has lived with rheumatoid arthritis since she was four years old and uses her experience to help others with chronic illness. She has written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Lene serves on HealthCentral's Health Advocates Advisory Board, and is a Social Ambassador for the RAHealthCentral on Facebook page, facebook.com/rahealthcentral. She is also one of HealthCentral's Live Bold, Live Now heroes — watch her incredible journey of living with RA.