Editor’s Note: This article is a part of an Op-Ed series, “Second Opinion,” where patient experts share their take on current research, news, and trends in health and medicine. The views expressed in this article do not reflect the opinions or views of HealthCentral.com.
In the space of patient advocacy, there seems to be a lot of opinions and even more confusion. What is a health activist? Is that different than a health advocate? Can I be both? What if I’m neither? Do I have to be a patient? There are so many people out there who are passionate about so many different health conditions but we can’t all seem to agree on what to call ourselves and who is qualified to hold that title (whatever it is). I don’t know what the right answer is but I will say that after I started working at WEGO Health, and being exposed to so many different health conditions, my opinion of what a health activist or advocate is has changed.
Eleven years ago if you asked me what a health advocate is, I probably wouldn’t have been able to give you a clear or concise answer. I honestly had no idea. But 10 years ago, I was diagnosed with multiple sclerosis (MS) and …well, I probably wouldn’t have had an answer then either.
About a year or two into my MS diagnosis, I began to write a newsletter, which later morphed into a blog. My goal was to reach 20-something MS patients because I felt like there was nothing out there for people like me at the time. Looking back, this was the beginning of my advocacy work. It was where my passion for bringing people together began, and it hasn’t really stopped since then. After that came the ulcerative colitis diagnosis and then another blog. Then Girls With Guts was incorporated and then speaking opportunities came, with invitations to speak on patient panels and go to patient summits. Right around this time was when I started to call myself a health activist and often interchanged that with health advocate. I felt like I was really doing it big, I had a positive voice that was reaching a lot of patients, and most people wanted to hear it. My opinions mattered and people were even paying me to offer those opinions up. To me, this is what a health activist was, someone in the spotlight, someone who reached lots of people.
It’s easy to look at top patient advocates and think that they are the epitome of advocacy. I used to think that getting speaking gigs or working with pharma meant that I had made it as an advocate, but I’m happy to report that I no longer believe this. I come from a background of two very public chronic illnesses. There is no shortage of IBD and MS advocates (which is great), so it is easy to think that he or she who reaches the most patients and has the most likes/followers is clearly doing the best work and is the strongest health activist. So many people often get caught in the shadow of these “celebrity advocates,” if you will. But I’ve been privileged enough to work with quite a few rare disease communities that do not have the numbers that MS and IBD have. Some conditions have very few people talking about them, much less publicly sharing their stories and advocating. And this is where my opinion changed.
So what is a health activist?
In my opinion a health activist is anyone, anywhere, who is passionate about making change in a disease community whether that is on a large or small scale. I personally feel that this is the same thing as a health advocate and that the terms can be used interchangeably. These are people who are looking to raise awareness, educate, and do good within their communities.
I think anyone who shares their story can be considered a health activist/advocate. Anyone who talks to other patients and shares knowledge or gives comfort is an activist/advocate. I also think that those patients who operate on a much larger scale like celebrity advocates can also call themselves a health activist or advocate.
There are a lot of wonderful people out there, doing a lot of really great things that are not in the public eye. They do not have blogs or Facebook pages, they are not the spokesperson for a pharma company, and they definitely don’t have articles written about them regularly. But these patients and caregivers make just as much change as large-scale advocates.
So what about those larger scale advocates? I’ve recently come across a new term for patients who are out in the public eye and making big moves in front of the right people. I think these people can be considered “patient leaders.” Not everyone wants to be a patient leader and not everyone needs to be one. All conditions need people at every level because the one-on-one work is just as important as lobbying in Washington, D.C.
I’d like to rewrite the definition for all health activists and advocates to simply be someone who is passionate about health conditions and making patients’ lives better. That should encompass all of us, at every level, and also be open-ended enough to make us all feel welcomed. At the end of the day, we’re all looking to do the same things: raise awareness and improve patient lives. Anything above and beyond that is great! But focusing on those two things is just as important and valued. There is a place for everyone in advocacy.
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Jackie Zimmerman is a multiple sclerosis and ulcerative colitis patient and the founder of Girls With Guts. Since diagnosis, she has blogged her IBD journey at Blood, Poop, and Tears. Jackie has worked hard to become a strong voice in the patient advocacy community. In her free time (what free time?!) she spends time with her two rescue pups and plays roller derby. She’s online @JackieZimm.