When I e-mailed Karen to ask if she would provide me a copy of her book to read and review, I did not realize that, first, I would not be able to put it down, and two – that she and I, while our stories are not similar, share similar struggles and burdens in a life with rheumatoid arthritis. Her story is about love, travel, disaster, and personal success and happiness while living with RA. Karen has tried to live a good life while trying to hide the secret burden of RA.
Karen has model looks. She is a native Australian who has traveled the world, worked as a nanny to a rock star’s children, and has met many celebrities. She works as a teacher at the United Nations International School and is married to a British man. If you look at Karen’s life from this angle, you would think she has had one heck of a great life. Read her memoir, Enemy Within, and you will disagree.
Karen was diagnosed with Rheumatoid Arthritis at age 17 and now at age 46, the toll of RA is evident in many of her joints, including her hip which she had replaced at age 28, and her bent fingers. At one point, she was in a wheelchair for nearly two years and almost died of pneumonia due to having a poor immune system. Her kind, loving, and patient mother took great care of her during those really tough periods and her amazing family and friends stood by her side helping her to carry on. She was in two abusive relationships (one physical and one emotional) and tried to make those work because she felt that no one could love her because of RA. Moreover, she kept her disease hidden from everyone in her life except her family and a few close friends.
After leaving her native Australia and settling in New York, she had, in the summer of 2001, run out of RA medications brought from her home country. She had no choice but to visit a rheumatologist in New York City. She was prescribed Remicade and within 24 hours, her symptoms were eased for the first time in nearly 20 years. It did not take long for an arthritis advocate to be born, especially after Karen found out that biologic drugs like Remicade were not available in her native home. The following year, Karen went home to Australia and contacted media outlets to share her story. Time Magazine in Australia interviewed her. She also wrote letters to the Prime Minister and other government officials to spread the word and to urge them to make biologic drugs available to Australians suffering from Rheumatoid Arthritis, and other autoimmune diseases. Her efforts came to the attention of the Arthritis Foundation of Australia who thanked her for raising public awareness. Two years later biologic drugs were available to Australians.
For the first time in nearly twenty years, Karen was optimistic because her disease wasn’t hindering her and this allowed her to continue to advocate through the Arthritis Foundation. She also has an educational website about RA titled Karen and Arthritis and she hosts an informal online support group for those living with arthritis.
Reading Karen’s book, I didn’t see her as someone with RA as I don’t see myself. However, I see her and I see myself as two persons living with optimism despite RA. I think it has taken both of us a long time to come to that realization. It took Karen a lot longer because she didn’t have the treatment opportunities that I have had living in the United States. Thirty years ago, a diagnosis of RA was crippling. Karen’s book is a great testament about living a resilient and optimistic life despite chronic illness. Her life’s journey is a story of growth and a story about the power of hope. It is a must read for the newly diagnosed RA patient, a great read for those of us who are experienced RA patients.
Karen’s journey has not been an easy one but it has been a learning experience. She has learned a lot about love and people along the way. She has learned a lot about herself and has learned to love herself along the way. She and her husband, Matt, were trying to have a child and Karen’s inability to conceive took a toll on her and her marriage. Only then did she realize what she needed to do to change and really accept RA in her life. No one’s RA, or chronic illness journey is a pleasant one but it is a learning experience that teaches us to seek out our own inner strengths and to have identities despite chronic illness. Enemy Within is Karen’s journey and I invite you to read it.
One of the main reasons I couldn’t put the book down was because I saw Karen growing up through this diagnosis and despite her ups and downs, she found her way. My diagnosis and road to acceptance was similar and I also have come along way from being someone who was afraid to be disabled. I thank God everyday for that growth, and while, I don’t plan on writing a book, I am grateful that there are people out there like Karen Ager who are willing to stand up and talk about their journeys of struggle and growth.
Thank you Karen for this amazing book, for allowing the rest of us to laugh at your dad’s crazy antics, and for sharing some very intimate parts of your life.