Kathy Bates on overcoming the lowest point of her life and channeling it into positive change
Kathy Bates is taking one of the lowest moments of her life and hoping to turn it into a catalyst for positive change.
After undergoing a double mastectomy in 2012 following her diagnosis with breast cancer -- a disease common on the maternal side of her family -- the Oscar-winning actress experienced major swelling and pain in her arms, which doctors discovered was lymphedema. The little-known disease is caused by a collection of fluid, commonly after cancer surgery, that results in swelling in the arms and legs, and nearly 10 million Americans suffer from it.
During a recent interview with AOL.com, Bates said that she knew that lymphedema was a possibility for her following her surgery.
"I was almost more afraid of the lymphedema possibility than I was about losing my breasts," she told us over the phone. And it was that secondary diagnosis that nearly broke her.
"I was enraged," she said. "I was in my 60s. The loss of my breasts on top of this diagnosis with lymphedema, which came during a summer after my television show had been cancelled, got me so angry. I thought, ‘Okay, my life is over.’"
But then Bates was connected to Doctor Emily Iker, who helped her treat the condition, get it under control and educated her more about the condition, which the actress called "not only physically debilitating, but psychologically debilitating."
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Treatment for lymphedema includes compressing fluid out of her arms and wearing a custom-fitted compression sleeve to avoid aggravating the swelling while doing normal tasks or ingesting things like alcohol or too much salt.
"When I get on a plane, I have to wear my compression sleeves, I can’t lift heavy things, I can’t go into hot water because putting heat on it makes it swell, but cold isn’t good because it constricts everything," Bates explained. "I wear my sleeves when I’m doing any kind of work around the house or any kind of exercise. Salt also makes it worse, and alcohol makes it worse, too. But I want to emphasize that I’m one of the lucky ones."
Since getting her condition under control, the actress has become a national spokesperson for Lymphatic Education & Research Network (LE&RN), through which she has met many people who, she says, have it way worse than she does. In the years since, Bates has taken her rage and channeled it into genuine action, striving to enact change in order to get more funding for research through the National Institute of Health.
One of the issues, as Bates explained to AOL.com, is that "during four years of medical school, young doctors will spend anywhere from 15 to 30 minutes on the lymphatic system. And, since they don’t spend the time learning about it, it’s not on licensing exams in the States. If it’s not on your exam, it’s out of your universe."
The lack of education around lymphedema and the various other lymphatic diseases has created a misconception that it's either simply a cosmetic issue or one that not many people deal with, which makes cultivating and arguing for change difficult.
"Trying to enact change in DC seems insurmountable because of the lack of education," Bates explained. "This is a very tumultuous time in our history, and there are so many difficult problems facing all of us. It feels like we’re at the back of the line. Our purpose in going to DC it to lobby and continue to talk to congressmen and senators who have lent their support to see if they can take the next step with us."
The actress will lead a group of activists this weekend in our nation's capital in an effort to ask Congress to ensure that $70 million of the National Institutes of Health’s increased budget will be allocated to lymphatic research. Bates is hoping that her career as an actress will help LE&RN tackle its most difficult challenges.
"First you have to get people to understand, then from understanding you have to get to empathy. And if it isn’t empathy that hits on a deeper level, it just disappears for all of us from our priority," Bates said of raising awareness. "What I do for a living is create empathy for my character. Even if I’m playing a horrific person, I always try to find the humanity in them. That’s just what I do. Compared to the real world, it’s an escape and an entertainment and certainly there’s value for that. But to be doing something in the real world has been very rewarding to me."
Throughout her storied career, Bates hasn't attached her name to many causes, either, which makes this experience a new one for her -- one that occasionally brings back tumultuous memories for her.
"Advocating sometimes brings back all of those unpleasant memories, and I don’t know when that will hit," she explained. "Sometimes when I talk about all of this, it’s painful to relive. Now that I have it and have the celebrity to talk about it, it’s sort of just God’s way. It’s a way for me -- when I never expected this -- to do something in the real world that is helpful. That’s the other side of the coin. It’s been wonderful for me to realize that our journey with LE&RN ... it felt insurmountable six years ago when I got involved. I’ve never gotten involved with a group like this, and I’ve always been very shy about lending my name for anything unless it was something that I really cared about."
"Something has to happen here!" she added. "It just seems so unfair to me. Let’s get on the horn."
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