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machado: canada's advocates are burning out
healthcare advocacy is critical work that keeps us moving forward, ensures that people and systems are held accountable, and fills the many gaps that exist in our healthcare system. so why don't we value it?
nov 17 2023
4 minute read
let's stop making it so difficult for advocates to get into the rooms where policy, spending and care decisions are made.
getty
“ i’m at the end of my advocacy career, burned by many orgs and feeling bitter.”
this, from a colleague who is, by all accounts, a superstar advocate, showing up in a variety of spaces in need of strong voices, including cancer, disability rights, and healthcare system policy.
she was writing to say she was wrapping up her work in the “trying to change the world” vein and that she was tired.
it seems to be happening more and more lately — the fading out of people who have spent years, decades even, of their lives fighting to make change in healthcare. whether it be taking a step back, or resolving not to try so hard or choosing a whole other career, some advocates are turning their focus to self-preservation. their focus could be getting patients recognized as valued members of the healthcare team, caregivers engaged as partners, drug access, diagnostic delays or hospital bed shortages (and so many other things), but right along with doctors and nurses, canada’s advocates are feeling done. exhausted. hopeless.
burned out.
burnout is “ubiquitous in our culture”
and it’s not really a surprise. a phenomenon that the new york times called “ubiquitous in our culture,” there’s almost no one who has been untouched by burnout, particularly in the last few tumultuous years. from healthcare professionals, including those who care for animals, people in workplaces, those who work from home, stay-at-home parents, the unemployed, heck, even our kids — we are all running on empty. of course, there are the obvious suspects that are driving feelings of paralyzing blah, despair and irritability: a pandemic, worrying rising costs of living and war. but there’s something else, and it’s perhaps the most emotionally and mentally lethal component of burnout — the sense that you lack the ability to be effective.
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in the 1970s, american psychologist herbert freudenberger was one of the first to use the term “burnout” to describe the impact of extreme stress, particularly among those in “helping” professions — those who do for others, like doctors and nurses. of course, we know that “helping” roles also include caregivers (paid and unpaid), social workers, teachers, first responders, and yes, advocates too. and though being burned out is not recognized as a medical condition, according to the world health organization (who), perhaps it should be. beyond fatigue and feeling frazzled, burnout can also cause pain, gastrointestinal problems, difficulty concentrating, and depression.
certainly, it’s not difficult to understand why someone working in advocacy would burn out. after all, these are the people who, much like healthcare professionals, are working to save lives, or at least make them better. like healthcare professionals, they experience moral distress and compassion fatigue. but unlike healthcare professionals, many advocates don’t choose advocacy — it chooses them and often after a not-so-nice life experience like an illness (their own or a loved one’s), a child with complex needs, unexpected caregiving, or witnessing an unforgivable failure of the healthcare system. they are often unpaid, driven by the fact that they have skin in the game. for them, advocacy is deeply personal. and making change happen for good is the reason they get up every morning.
advocates fight for a seat at most tables
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also unlike healthcare professionals, people who advocate often don’t have massive organizational infrastructures behind them, with protective unions and administrations and funders. they often don’t have the same support of academia or governments — they build their own connections, in many cases with blood, sweat and tears, literally. advocates also have to fight for a seat at just about any table, except usually, the one that’s surrounded by other advocates. they ask the hard questions, aren’t afraid to ruffle feathers and speak out as often as they can. they won’t be told that something can’t be done, even when things seem without hope. people who advocate are amazing and extraordinary and we need them desperately.
and while we tend to think of advocates as people who are “officially” affiliated with an organization, the term covers so many others, many of whom don’t even think of themselves as doing a “helping” job. so if you are a caregiver, if you have ever spoken out for someone who can’t do so for themselves or asked a tough question about your care or a loved one’s during a doctor’s appointment, then you too are an advocate. and you too are at risk of burnout.
so how can we protect those who advocate? it starts with acknowledging the value of advocacy, of course. it’s critical work that keeps us moving forward, ensures that people and systems are held accountable, and fills the many gaps that exist in health care. when organizations ask advocates to speak at their conferences, weigh in on their marketing decisions and share their lived experience with sales teams, this is consulting work and should be paid as such. and know that every time they tell their story it hurts, it brings them back to that hard thing that happened to them or someone in their community — that thing that they don’t want to ever happen again.
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finally, let’s stop making it so difficult for advocates to get into the rooms where policy, spending and care decisions are made. let’s not be so quick to say no because nothing to do with fixing canada’s healthcare system and supporting patients and caregivers will happen without opening our minds to the possibilities that only lived experience can visualize.
if we can take this mission on and value those who speak up, both in terms of money as well as by acknowledging the emotional and mental cost of this work, and make it so there are more yeses — at least more maybes — than nos, perhaps we can weather the storm of burnout that currently threatens canada’s advocate community.
because, man, without our advocates, we’re screwed.
lisa machado is the executive producer of advocacy & better health. you can reach her at lmachado@postmedia.com.
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