The Quest for an RA Spokesperson: Looking for Our Jolie

Lene Andersen Health Guide May 22, 2013
  • RA needs a spokesperson. Someone in the public eye. Someone who is respected and admired. We need someone to whom people will pay attention, someone who can in one moment teach the world about RA.

     

    Last week, Angelina Jolie did that for breast cancer. She shared her story about being one in a fraction of women who have a faulty gene which greatly increases their risk of developing breast cancer. Her courage in coming forward didn't just create awareness about this gene, but also made a lot of women decide to be more vigilant about mammograms. On top of that, Jolie also spoke about the financial barriers that may prevent women from getting potentially life-saving tests. The story went viral, crossing boundaries between news and entertainment media. Everyone were talking and writing about it. Of all the roles she's inhabited, this is arguably the most badass!

     

    Can you imagine if someone of Jolie’s stature came forward about their RA? It would have an explosive impact on the misperceptions about RA being the same as OA and help others understand what an autoimmune disease is. In one fell swoop, public knowledge about our disease would take a giant step forward.

     

    The Vicious Cycle of Ignorance

    Two years ago, I interviewed Christine Schwab, author of Taking Me Home from the Oscars, her memoir of life as a television style reporter and person living with RA. She tells the story of an Oscar-winning actress, who came close to coming out about her RA. Her publicist dissuaded her, saying it would ruin her career. Why? Because of the confusion between OA and RA — in youth-obsessed Hollywood, having a disease that "old people" get, will kill your career. It's a vicious cycle: people who have the potential to create massive change are afraid to come out because of the myths surrounding arthritis. The myths and stigma surrounding the different kinds of arthritis continue because no one will come forward.

     

    This vicious cycle has kept the public ignorant and well-known people with RA trapped in isolation for decades. The first celebrity who decided to come forward was Rosalind Russell (1907-1976), particularly remembered for her role as Auntie Mame. She developed RA in the 1960s and after hiding her disease for several years, finally went public. Russell successfully lobbied Congress to develop the National Arthritis Act. After her death, Congress created the Rosalind Russell Medical Research Center for Arthritis at UCSF in 1979. That's an incredible legacy. Other celebrities have acknowledged their RA, but most are not willing to be interviewed about it.

     

    It is understandable that celebrities, just as everyone else, wish to keep their personal life private. However, as Angelina Jolie has just demonstrated, it is possible to balance activism and privacy.

     

    Making the Case

    There’s a reason leading rheumatologists consider RA to be a medical emergency. RA is a serious illness with serious consequences, for those who live with it and for our society.. It can lead to disability, reduced ability to work, severely impact quality of life and cause lower life expectancy. Medical care and treatment are prohibitively expensive and without treatment, disability is inevitable. This disease costs society money, in lost ability to work, disability and use of medical services. This isn't "just" arthritis.

  •  

    The public doesn't know this, however. They continue to believe that RA is something old people get, that it's primarily an annoyance, the source of the TV commercials’ "minor arthritis pain." People living with RA are advocating for awareness, research dollars, legislative change and proper attention in the media. Together, our community is working hard to make the future brighter, to correct misconceptions, but we can't do it alone. We need something more.

     

    We need an Angelina Jolie.

     

    A Personal Appeal

    Dear Oscar-winning actress. Dear mega-star celebrity. If you're reading this, please consider coming out about your RA. We need you to shine a light on the reality of RA and the costs of this disease.

     

    We understand that being open about having RA can be a scary proposition, but you won't be alone. There are millions of us around the world who will rally behind you. If you want to start in a friendly place with an interview for HealthCentral’s RA site, contact me at landers5ATgmailDOTcom. As a fellow member of the RA community, I will take good care of you.

     

    I promise to write an article that shows the world just how badass you are!

     

     

    Lene is the author of Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain.