That’s what Nancy Davis, founder and chairwoman of Race to Erase MS, tries to stress. “Think of yourself as the chief wellness officer of Your Health Inc. If you can’t be your own CEO, find a family member or friend who can be your health advocate,” she wrote on Tippi MS, a growing community of people sharing tips for living well with MS. Davis’s tip is the most popular one on Tippi MS, garnering more than 135 upvotes, which is why Everyday Health wanted to talk to her about how this approach has helped her along the way, as well as ask for more advice to help you better advocate for your own MS care.
What It Means to Advocate for Your MS Care
Why should you advocate for yourself? The answer is simple: You know yourself best. You know your experiences and symptoms, how MS impacts your lifestyle and emotional well-being, and what steps you’ve already taken to manage the condition. You also know what’s important to you and what gives your life meaning. “No one knows your body better than you,” says Davis. “You have to be honest with yourself and really ask, ‘Are you being the best CEO of your body? Are you doing everything you can to be as healthy as you can be?’” Julie Fiol, RN, associate vice president for healthcare access at the National Multiple Sclerosis Society (NMSS), agrees with this approach. “You know your body best, and you are in charge,” she says. “Remember that quality of life is important, and having MS should not stop you from living.” “The sheer amount of information available can be overwhelming, and it is especially difficult when compounded with the fact that decisions about care often need to be made during times of heightened emotions like a new diagnosis or worsening symptoms,” she says. One way to counter information overload while still staying up-to-date on the latest MS research, treatment news, and diet and exercise recommendations is to follow a reputable organization, such as the National MS Society, or connect with one of the society’s MS navigators for answers to specific questions. Another tip from Davis is to find someone in your personal life who can help you make decisions, especially when your MS flares. In her case, that someone is primarily her husband, but sometimes her adult sons weigh in, too. “When you get to a time when you can’t make choices, which happens, do you have an advocate in your life who can do that for you?” she asks. “Having someone you listen to is really critical. [Sometimes] you need a loved one who can help you make choices even when you are able to make choices yourself.”
5 Ways to Advocate for Yourself at Appointments
Here are some tips from Fiol that can help you advocate for yourself at doctor appointments:
MS Advocacy in Action: How Nancy Davis Stays Positive
Davis gives her advice from experience; she has lived with MS for almost 30 years. When she was first diagnosed, there were no drugs approved to treat MS, and doctors told her she would never walk again. As a mother of three at the time (she now has five children), Davis refused to accept this prognosis. “I had to be here for my children,” she says. “I didn’t have the luxury of just going home and going to bed. I needed to be here every day and to do well.” In 1993 Davis founded Race to Erase MS, a nonprofit that funds MS research. Now, with more than 20 drugs approved by the U.S. Food and Drug Administration (FDA) to treat MS, the outlook for people diagnosed with it is much brighter. Although there isn’t a cure yet, these treatments can reduce relapses and slow the disease’s progression.
