Christine Schwab wants to change how the world sees rheumatoid arthritis.
Diagnosed 20 years ago, Christine has been in hiding about her RA for almost as long. She knew that if she “came out” about her disease, she would lose her career as a fashion and style reporter working with major television shows such as Live with Regis and Kelly, The Oprah Winfrey Show, The Today Show and Entertainment Tonight. Throughout the 90s, she was desperately sick with flaring RA, trying every combination of medication available with minimal results. Although she never missed a day of work, the RA continued to take its toll, robbing her of function, changing her joints and affecting her ability to live her life. Once, she had to walk out of the Oscars, barefoot with her designer shoes in her hands because her feet were too swollen and her pain levels too high to stay for the event.
“I Am the Long-Term Study for Enbrel”
Christine is no longer hiding. Eleven years ago, she was one of the first people to be prescribed Enbrel and, as so many who try the Biologics, she “got her life back.” She considers herself “the long-term study for Enbrel” and when answering concerns about possible side effects, she says “I will never, ever go off it unless I have to because of severe complications… We take a chance when we get in the car every day, I’m willing to take my chance with Enbrel because I love having my life back.”
Is this change, both in her own life and in the new treatments available for RA that motivated Christine to speak openly about her disease. She chose to do so in a memoir, Take Me Home from the Oscars, in which she shares stories of her life with RA. This memoir of a life with RA is framed within memories of two contrasting life experiences. A rough childhood, where she was boarded out during the week by her single mother, who didn’t know how to parent and a life of glamour and excitement in her career as a fashion and style reporter. It is a wonderful book, taking you on a ride through the world of glamour while telling a very relatable story of trying to live with a chronic, painful illness. I highly recommend reading it.
“I Want to Change the Perception of RA”
“I think it’s terrible that people feel they have to hide because they have this disease … I want to make people more aware, to change the stigma and make it a disease we can talk about in the open.” As anyone who lives with RA, Christine fights the misperceptions and lack of understanding about the disease every day. Her friends in the media are very supportive, helping her to get the message out, but people who don’t know her “are not interested**,** even some of the medical shows” because, she says, it is perceived as “old … and everyone in television or going for a young audience.”
Christine tells the story of being approached by “a very reputable movie production company” about the book, wanting to make it into a movie, “but with one caveat: change the disease.” Christine believes that changing the perception and the stigma of RA will take two things: the involvement of major celebrities and changing the name of arthritis. She knows of two major celebrities, one an Academy Award winner, who considered speaking out about living with RA, but who were both dissuaded by their agents out of fear of the impact it would have on their career. She hopes that her efforts to “start a conversation” about RA will help in some way to change this reality.
Christine also believes that changing the name of arthritis could make it “sexier” and thereby bring it more to the forefront. She says “there are 100 different kinds of arthritis and like The Big C covers all kinds of different cancers, The Big A can cover all the different kinds of arthritis, make it really simple.” Speaking to people in the field, Christine knows that “there is a cure for arthritis and it’s not very far away … It takes more money, takes more awareness” and she believes that changing the name will make it more accessible and acceptable to have arthritis.
“There’s so Much Hope”
Being open about her RA was “a very difficult decision” for Christine. She knew that “people would perceive me differently in my career, but I felt like maybe I could make a difference.” Although she believes coming out has had a negative impact on her career, she’s excited about being a spokesperson for The Arthritis Foundation. Earlier this month, she was in Washington DC and spoke on the steps of the Capitol and intends to continue to speak about arthritis and the need for funding, spreading the message of hope by speaking to Congress, on national television and through her writing. Christine believes that by changing the perception of arthritis, we can “make it so people can stand up and say ‘I have arthritis’ because there’s so many things now that can help them.”
On a personal level, Christine believes RA has giving her the gift of finding out that she "was stronger than I thought I was "and it has enabled her to realize her priorities. For years, she has had a stone with the word Believe written on it next to her bed and it is still an inspiration to her. She told me that “then, I believed in my ability to get through this, now I believe in my ability to make a difference in the disease.” This belief and this hope shines through her writing and who she is and I, for one, believe in Christine.
Christine Schwab and her publisher have generously donated two books for giveaway for our users. To enter, please answer the following question in the comment section of this post
“what makes you feel hopeful?”
Contest is open until Sunday, June 5, 2011 at 6 PM EST. Rules are that you must be a US resident, over 18 and a registered user of HealthCentral.The winner will be announced on Monday, June 13, 2011.
Our Arthritis Awareness Week Four contest is open until 11: 59 PM EST this evening. Enter to win a $200 gift certificate to the CVS online pharmacy.
*** Both these contests are now closed. The winners will be announced on Monday, June 13, 2011. Thanks to everyone for participating!** *
Lene is the author of the award-winning blog The Seated View.
Lene Andersen is the Community Leader for HealthCentral’s RA Community. Lene (pronounced Lena) is an award-winning writer, health and disability advocate, and photographer living in Toronto. She’s 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. Follow Lene on Twitter @TheSeatedView and on Facebook. Watch her story on HealthCentral.