Why Do You Practice Patient Advocacy?
Six HealthCentral patient experts discuss the reason behind why they advocate for their conditions
Life is busy enough. Now add a chronic illness (Or two. Or three…) and it’s not only even busier, it’s more exhausting, painful, and difficult-to-navigate. So you hardly need, or want, to hear about one more thing you Need To Do.
But patient advocacy – advocating for your health, your care, and the care of others with your condition – might just be one of those things that you should seriously consider doing. Why? HealthCentral’s patient experts Alisha Bridges, Lisa Emrich, Charis Hill, PJ Hamel, Carol Bradley Bursack, and Mike Veny give you their reasons for taking part here:
Alisha: I practice patient advocacy because it's our voices that will drive change. In the last few years, those of us with psoriasis have had better treatment options, changed the stipulations of step therapy, and spoken with the [Food and Drug Administration] about the importance of approving medicines — this is patient advocacy. Using our stories to promote change, not just for ourselves, but for the community as a whole.
Lisa: I feel strongly that those of us living with a condition who are able to speak up on behalf of our community should do so. I am fortunate to be a patient advocate and to use my voice to help others.
Charis: Advocating gives me purpose beyond just surviving. I have always advocated for others, so when I was diagnosed with ankylosing spondylitis, it was natural to begin advocating for myself. There is a certain kind of hope that comes from speaking for others who cannot or choose not to speak for themselves simply by sharing my own story.
I have seen laws change and public awareness grow as a direct result of my advocacy.
Why stop now?
PJ: I practice patient advocacy for one reason: I want to help women going through breast cancer. Whether that means working on a traffic and parking study in order to make the journey from parking lot to infusion suite as painless as possible; pressing for cold cap technology during chemo so women don’t have to lose their hair; or changing the layout of the cancer center waiting room to improve privacy, the Patient and Family Advisory Committee (PFAC) [which PJ leads at her local hospital system] has tackled issues with energy and determination.
Carol: My dad had surgery to correct effects that aging brought to the remains of a World War 2 brain injury. He went into surgery whole. This surgery was to prevent fluid building up behind scar tissue, which would eventually cause dementia. Unfortunately, something went wrong and Dad came out of surgery with severe dementia — literally overnight. While I've spent over two decades caring for a total of seven elders, it was Dad's experience that launched my advocacy. One book of my own, involvement of several others written by medical professionals, a newspaper column in its 12th year of publication and going strong, articles on several large websites, and a large social media following has been the result of my advocacy. Interviews including by The Wall Street Journal, U.S. News & World Report, Kaiser Health News, and radio stations large and small know where to come for caregiving information. I'm nowhere near quitting. I've lost an enormous amount of money as a family caregiver and don't see a quality retirement for myself when the time comes, but I'd never have done it differently.
I will remain an advocate for life.
Mike: I practice patient advocacy because there are [many myths (https://www.healthcentral.com/article/myths-about-mental-health-and-violence) surrounding my illness. Because many of these myths are widespread and popular, it makes it difficult for people with my illness to get the help that they need due to shame and not being aware of resources.