I saw a Twitter thread recently from a friend and fellow advocate who was wondering what his future in patient advocacy looked like. I’ve seen these types of threads a lot over the years and I understand…I’ve been there. Maybe it’s the new set of Lion King socks I recently purchased, but I’ve been sharing this idea of the patient advocate circle of life a lot lately and now it’s time to share it with all of my advocate friends. Whether you’re new to advocacy, or you’ve been around the block a few times, take a peep. Let me know what you think. #sorrynotsorry about all the Lion King imagery.
I believe there is a lifecycle in advocacy.
After almost 15 years in the game this is what I’ve noticed:
- New Advocates – These are the freshly inspired bunch. They’re newly diagnosed or have a loved one who is. They’re fired up about helping people and are excited to be sharing their stories. They do a lot of one-on-one education and support for other patients.
- Strong and Steady Advocates – These are the advocates who have been on the scene for a few years. They’re still working on growing a following, and they’re getting some cool opportunities in advocacy. Their hard work is starting to pay off.
- The OG Advocates – The OG advocates have been advocating for many years. Many started before social media and their names are permanent fixtures in their communities. They’re invited to be speakers at events, to sit at the table with pharma, and are often working hard behind the scenes on things that NDAs prevent them from sharing.
I remember when I started my first blog many moons ago, I was so eager to talk to other patients. To help them. To educate anyone who would listen. A few years in, one of my best friends in advocacy stepped back. She closed her website down, all of her blogs and resources were gone, and I was angry with her. I kept thinking about all the amazing things she had created for other patients that were no longer available. I couldn’t imagine walking away from advocacy and just being done. Wasn’t she letting people down? Was she turning her back on us? How could she do that?
Fast forward a few more years, and I was starting to feel the weight of the work that goes into advocacy. And I do mean work. Never let anyone tell you that your blogs or videos, even your Tweets, are not work. All of us here know the time it takes to write a blog or film a video, create the graphics, and schedule it out on social media. Whether you’re working a job right now or not, your advocacy IS a job and we all take it so seriously. This is why when it stops lighting up your life it can feel very heavy. I didn’t love advocacy the same way I did before. My advocacy fire was slowly dying. The work felt too much like work. The juice wasn’t worth the squeeze and I stepped back. And guess what? No one noticed. People with IBD didn’t have their butts blow up. The MS patients who read my blog didn’t collectively collapse. The world went on. And you know why? Because of new advocates.
The second someone decides to step back temporarily or permanently from advocacy there is always someone new and excited to jump on the scene. It’s some Lion King circle of life shit. Once the new advocate isn’t “new” anymore, they become the slow and steady advocate and if they stick around long enough they become the OG. And I want to really highlight this:
THIS ISN’T A BAD THING! It’s easy to read that and think, “oh so if I take a break, I’ll be replaced.” That’s not what I’m saying. I’m saying that if you take a step back, your fellow patients and caregivers are not abandoned. There are other people who will step in and support them and that is actually a beautiful thing. It adds new perspectives, diversifies our communities and adding more people who back the same cause is never a bad thing. Not to mention the harsh reality of advocacy is that sometimes our friends and peers succumb to their illnesses and in order to keep fighting the good fight we need new people to take their places.
All of this suffice to say: It’s ok to stop. But only if you want to. This isn’t like you’re aging out of the system. Your voice will always matter in your community. Your story will always matter. This is the internet, after all, your shit will live here forever. If advocacy doesn’t set you on fire (in a good way) anymore…step back. Take a break. Hell, stop altogether if you want to.
The work we do as advocates isn’t about us and it’s also 100% about us at the same time.
I always looked at advocacy like an appendage to myself. It is me. I am it. But it’s not. It’s something that I do and when it no longer serves me in a positive way anymore, I can stop doing it. And I have at times. I think that is something we all forget. You have permission to stop if you want to and it doesn’t have to be a moral dilemma. You can always come back and if you have somehow possibly forgotten…you’re probably sick in some way or support someone who is. You need to put yourself first. Your goal is to live a happy and healthy life, and creating content you don’t like, attending Twitter chats that bore you, and stressing out over weekly vlogs goes against the happiness goal and probably wears on the health goal.
The world of advocates, online and in-person, cross condition areas is one of the most amazing communities I’ve ever been a part of. In the last 5 or 6 years, I’ve seen a lot more advocates connecting outside of their primary communities and I think it is only making us stronger. This community sees you. We know how hard you work. We know the time it takes to be a digital creator and we also know that more times than not you’re not getting paid to do this stuff. You may not even be getting thanked very often.
So, fellow advocates, please take care of yourself. Take some time off. Come back …or don’t. Thank you for all the work you do for your communities. Thank you for being apart of my community and for supporting me and everyone else in our growing family of advocates. Your work matters and so do you. Never forget that.
Something I’ve been thinking of – a lot – as the old year died away and some new health issues have popped up, Jackie. TImely and poignant as I oft find your musings. Well done! Cheers, Trevis (OG by this point, I suppose…)
Definitely OG, Trevis! One the best, you are.
What a fantastic post!!! This might be my favorite post I’ve read in a very long time. As you know, I too have pondered this topic, removed myself from people & projects, made changes, got emotional, then didn’t give a crap, & now I’m very involved in advocacy but also am starting to learn how to be just me & it’s a much better environment! I still harbor stress & time management guilt, but that’s my issue. I’ve recently pondered saving my posts, but shutting the lights off my blog… but I’m not there yet.
I often think the burn out comes from the fact that many of us have bad boundaries. It sounds like you’re doing a better job of setting good boundaries.
Just read your December blog post re: the last 10 years. I was just diagnosed with MS last week and diagnosed with Crohn’s in 2008. So glad to find your blog–thank you for sharing your story. I’m so appreciative to have found you and to be able to read your insights.
Hi Lauren! I’m glad you’ve found me too. I’ve got a few years on you, so reach out if you’re ever in need!
For me the journey started sitting in a specialist’s waiting room chatting to the elderly lady beside me while being kept waiting sometimes for more than two hours – twenty years ago. Some days I just feel tired. So your words resonate absolutely.
This stuff is supposed to reinvigorate us…or at least that’s what it does in the beginning. If you’re feeling tired, that’s always a good sign for me that it’s time to reassess.
Echoing what Mary wrote ^^
Definitely the best post I’ve read in a very long time, Jackie!
Some thoughts from the toast section (35 yrs as a Pt; 26 yrs as a medical mom):
You know you’re burned out when:
1. You’re exhausted by the advocacy work itself (the very best barometer.)
2. You agree to volunteer on a group project partly because the leaders planned to set solid ground rules and boundaries to keep the group on track, but they never get around to doing it (ummm… see #1.)
3. You’ve stayed too long on a hospital PFAC, forgetting the “Leave before you’re fully ready to go” adage.
This may be the most yin / yang kind of patient advocacy work: If hospital leaders play favorites and you’re It, it feels good for a hot minute. But if you’ve been lied to as a patient or family member by that hospital or other medical organization; if you or your loved one has experienced medically induced trauma or survived medical error without so much as a “whoops” or “We’re so sorry”, don’t expect much (leopards cannot change their spots.)
Partial Credit: Many Orgs push hard to seek our feedback and partnership but without providing compensation or even acknowledging that there is any monetary value to our time +/or shared experience. They talk a good game but in the end, even when asked for a simple stipend to cover time and expenses, they will say they don’t have the money to pay patients who are un- or under-employed, or they’ll say “Next time” which never comes. Same orgs then boast of hiring pedigreed outside companies for marketing, surveying, analysis, to boost the signal for or to translate the patient voice… having missed the entire point. Don’t tell me my feedback is gold then value it like it’s rocks.
Honorable Mention: Recently I was on a half-day in-person working focus group about patient home monitoring for the AMA. The work was respectful, highly engaging and the compensation – which was equal for doctors, patients, nurses and office staff from medical practices – was outstanding. Same for several projects I’ve worked on for (first of its kind) Savvy Patients Coop. I’ve come to believe it’s this out-of-the-conference room thinking that will energize and boost change across the healthcare advocacy landscape, not my son’s mom’s tired old hospital PFAC.
#PatientAdvocacyBurnout is a thing.
Thanks for truth telling about patient advocacy, Jackie. It was a very refreshing read, especially the parts about being flexible. I’m being thoughtful and deliberate about my next advocacy steps; hope you are too.
This is a super great article. I felt like you were talking directly to me. I am a OG also. I was going strong for 15 years. I was traveling, speaking, hosting events; even started my own non-profit and than bang!!! I couldn’t do it anymore. I was tired, my health was getting worst and I’m a caretaker to my parents who are 85 years old. For the past 2 years I have just been taking care of me and it feels good. I’m coming back slowly in 2020. My health has improved and I feel revive; sometimes you do need that break.
Excellent and, for me, perfectly timed post. You’re speaking for so many of us, but for this codger who has been advocating as long as I’ve had MS – 33 years – I’m definitely OG and taking a step back to find my way along a different route.
You’re a light among us, Jackie. You always were and always will be.
P.S. I rarely see my buddy Trevis comment on ANYONE’s blog, so you’re definitely special! xo