"Kathy Bates is going to be on The Doctors"
This news last month excited members of my lymphedema support group as we discussed dates and channels to catch the broadcast. At last someone was going to talk about lymphedema in public and just in time for Lymphedema Awareness Month in March.
Oscar-winning actress Kathy Bates is the celebrity spokesperson for the Lymphatic Education and Research Network (LE&RN). In her segments on The Doctors, she told about her own experience developing lymphedema after treatment for breast cancer. She wore compression sleeves on the show and explained how she uses daily massage to keep the problem under control. Bates’ lymphedema limits her daily activities and causes fatigue.
Bates emphasized the need for immediate treatment after surgery that affects lymph nodes such as breast cancer surgery, and she called for more research and awareness. The doctors on the show explained how the lymphatic system moves fluid through the body. When surgery or radiation compromise this system, fluid can build up in the arms or legs and cause problems.
I’ve had lymphedema for about 16 years now, so most of what she said was familiar to me, but I was astonished when she said ten million Americans live with this problem, "more than muscular dystrophy, ALS, multiple sclerosis, Parkinson’s Disease and AIDS combined."
I was thrilled that someone was at last speaking up about lymphedema, but I was also annoyed not with Kathy Bates, but with a public health education system that doesn’t pay attention to a problem until a celebrity goes public. It took Betty Ford and some other prominent women talking about breast cancer to bring it out of the shadows. Now we frequently hear the news about public figures’ breast cancer and even what treatments they will be having for it. On The Doctors, Bates said she knows other celebrities who have lymphedema who are not willing to talk about it in public. She didn’t say why, but I would guess that people are afraid they won’t get good acting roles if they admit to it.
I understand why many people aren’t talking about their lymphedema because I am often reluctant to discuss mine. Although I’m not a public figure, I was cautious about discussing my lymphedema at work. Some aspects of my work like extensive typing or moving books around caused lymphedema flare ups, and I didn’t want my boss or coworkers to think I couldn’t do my job. On the other hand, sometimes I had to explain my condition to get the help I needed, and I found that embarrassing.
**I hope that Kathy Bates’ public explanation of lymphedema will make my life easier at the airport, the gym, and grocery store when I am wearing my compression sleeve. ** Most of the time when people comment on my arm, I am not sure what to say. I have learned that using the word "lymphedema" brings blank stares. It’s not always appropriate to start from scratch explaining what the lymphatic system is and why mine isn’t working. Most of the time I just say something like, "I’m wearing the sleeve to help control swelling," and let it go at that.
March is Lymphedema Awareness Month. If you are one of the ten million people in the United States with lymphedema, join me in educating someone you know about it this month. It shouldn’t take a celebrity to bring lymphedema out of the shadows.
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Phyllis Johnson is an inflammatory breast cancer (IBC) survivor diagnosed in 1998. She has written about cancer for HealthCentral since 2007. She serves on the Board of Directors for the Inflammatory Breast Cancer Research Foundation, the oldest 501(3)© organization focused on research for IBC. She is a list monitor for an online support group at www.ibcsupport.org. Phyllis attends conferences such as the National Breast Cancer Coalition’s Project LEAD® Institute. She tweets at @mrsphjohnson.