patient leader & advocacy burnout

This post has been rolling around in my head for quite some time. Unfortunately, 2 weeks of downtime from an upper respiratory infection, shingles, throw in a random TN (trigeminal neuralgia) attack and finally I had an opp to let my thoughts flow. Time to reflect, and regroup. Time to heal, and, much in line with this post, time to reprioritize.

It’s important for me to lay the groundwork for this post by saying that I APPRECIATE and RESPECT the entire MS-HSCT-DISABILITY-TN-CHRONIC ILLNESS community. I feel honored to continue to represent within the space as my 10 years as an advocate quickly approaches.

I’ve always felt (still do) that I was “made for this”…advocacy, that is. I’m a consummate cheerleader, fixer, problem solver, organizer, planner and creative. Add never-ending optimism and enthusiasm for any cause I get behind, and you’d think that energy would sustain me…indefinitely.

From content creation for blog posts, Instagram & Facebook, to my own podcast hosting, guest appearances on webinars, conference calls, summits and podcasts, in addition to being a lead admin for the last 9 years of an 8000+ member FB group seeking HSCT in Moscow…it’s A LOT!

Interestingly enough, this hectic scenario is not unique to me. It IS the typical life of a patient advocate/leader. We grind and grind and grind, knowing that if we could make a difference in just one person’s life, it would be worth all the hard work and time we’ve put in. We all want patients within the community to feel like they’re not alone. At one point or another, we’ve been in their shoes so we can relate. We get it. We get them. We can provide them with insight that no doctor, family member or friend can. We are walking, talking and living with our disease. OF COURSE we’re a valuable resource!

So, what’s your beef Brooke? It sounds like you’re juggling all those balls like a champ, you might be thinking. BUT, the reality is…at least for me, I’m totally BURNT OUT!

How much of my everyday life (groceries, housework, family time, daydreaming, etc.) is being sacrificed or reprioritized based on my advocacy work? Most importantly, how much have my own health issues been affected by committing my energy reserves to advocacy instead of simply living well with MS and TN (trigeminal neuralgia)?
Keeping it real, I don’t feel like this all the time. But there have been many times throughout the years that I do. More recently than ever before. I have to ask myself, “What are my goals with this advocacy stuff?” It’s not like I ever had a plan when I started doing this. I just wanted to share my own experiences in order to help others. Simple. Right? Like most advocates, I’m not getting paid and have never been paid a single cent for anything that I’ve ever been part of.
You know, there have been other advocates whom I follow in the chronic illness space online who have made a concerted choice to drop off the social media scene. As much as I miss reading their content and the comfort I found in it, a part of me is secretly envious that they’re free. Free of the never-ending obligations of content creation and “showing up” for the community. Free to just be. Free to not be consumed with illness 24/7. Free to pretend, if only for a day, that we’re just like the next guy. Living our life. Doin’ our thing…FREE.
I sincerely would like to hear from my kindred out there in the advocacy space who may be feeling the same way. For my sanity’s sake, I need to know that I’m not sounding like a whiny ungrateful schmuck. I need to know that I’m “not alone”.

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