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machado: advocacy needs to be protected, whether it happens in an organization or at a kitchen table

advocacy takes a certain amount of badassery. isn't it time that we reimagined a system that not only supports and acknowledges patients and caregivers but also makes it easier for them to make big change?

by lisa machado

mar 6 2023

5 minute read

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“i think i am done with badassery.”

this from a guy i worked with for many years on patient and caregiver projects. in his fifties, he had been living with a tumour in his stomach for decades, most of that time spent working toward better health policy and medication access. a few years ago, he invited me to lunch to catch up. he had just offered the last crusty bun that was languishing on a small square plate in the middle of the table before blurting out that he was “retiring,” using his fingers to make air quotes. he was the third person i knew to leave the world of advocacy in just a matter of months.

we had met at a conference 15 years ago when we were still wide-eyed over how hard it was to be a patient. he was pushy, yet affable, outspoken and smart. he liked to call advocates badasses.

our sudden front seat to cancer care had given us lots to be spicy about. we were grappling with the lack of resources and support for people living with cancer, while trying to make sense of what our diagnoses meant for us. but there was more. things like life-saving drugs that no patient could afford, clinical trials that no one had access to, and health-care professionals who refused to help their patients manage side effects that pretty much decimated any quality of life were shocking, discouraging and just couldn’t be ignored.

over the years, our paths would cross at conferences where we’d be speaking on the same panel or showing up as members of the same advisory committee. we have chatted on the grass of queen’s park in blowing snow and held signs on parliament hill in the pouring rain. sometimes we passed each other in the lobby of a company we were pitching for support for a patient or caregiver-focused program.

advocacy doesn’t leave much time for breaks

whenever we felt tired and discouraged, we would connect by phone, text or with tea and half-joke about a career shift. he always chose the job of a barista (weird, since he has an allergy to coffee grounds). for me, i imagined that i would run a little a stall on a beach in argentina that served nothing but fish tacos and guacamole.

dreaming about doing something else with our days wasn’t about the workload — although like anyone who plays an advocating role, whether in an organization or in their family, there was not much time for a break. it wasn’t even about the effort and tears that came along with supporting patients and their families as they made sense of lives suddenly torn apart by disease in an overburdened system — we agreed that there was no more important way to spend our energy. and then there was the loss. so much loss. but even that wasn’t enough to prompt thoughts of greener pastures.

it was more the fatigue from the effort it took to shed light on the needs of patients and caregivers, and then the disappointment when no one else in the room shared the sense of urgency or importance as people literally faced the end of their lives.

amid all of this, we were also gratefully aware of the difference that any kind of support made for us when we faced our own scary diagnosis: “it pulled me back from the ledge,” he would always say. so it seemed like a no-brainer to work toward the dream that one day, no one would feel the fear, isolation and hopelessness that we did.

my friend took a job in technology, writing plain language copy for an ai-focused company that focused on weather prediction. “a digital weather vane badass,” is how he described his role. but he didn’t quit advocacy completely — his tumour made sure of that. still, the work didn’t get any easier.

being a badass is hard, it doesn’t pay well and the finish line is always moving further away. if you are a living the life of a patient or a caregiver who often feels compelled to ask more questions, investigate options or complain when care stinks, then you also know that there are often more losses than wins. there’s also a lot of time spent in strange holding patterns where you’re unclear whether you are getting ahead, doubting if you are making a difference and worse, wondering if it’s even worth it.

why do we have to convince others that patients and caregivers are experts in their care?

and isn’t it so frustrating to have to justify, over and over, why patients and caregivers are experts in their care, why their experiences are valuable and why they absolutely must always be considered part of the care team? sort of like when people say that breastfeeding or eating vegetables is bad — it’s bonkers that anyone wastes their breath arguing about something for which the benefits to be had are crystal clear.

from all the letters we get at healthing, we know there are a lot of badasses out there. the woman who called to complain about the receptionist who made her wheelchair-bound mom feel badly: badass. the guy who ruffled his doctor by having the difficult conversation about getting a second opinion: badass. the young mom taking care of her dad who has dementia: badass. the guy who moved his brother with cerebral palsy into his home so he can take care of him: badass. and those who filled out a survey to comment on poor care and treatment, questioned a pharmacist’s advice, or insisted on more tests? badass, badass and yup, badass.

we see you, even though you might feel like you are in the shadows, alone. like penny leclair and allan carpenter and lynn daigneault, advocating for yourself, loved ones and others, is important work, whether it’s being done in organizations, around kitchen tables or in the lunchrooms of long-term care homes, and it should be protected. sharing experiences helps. finding a community and a network of support is good too. but it’s not nearly as powerful as straight-up recognizing the value of the expertise of patients and caregivers and those who advocate for them and reimagining a system that not only supports and acknowledges them but also makes it easier to make big change.

it seems that we could use a little more badassery.

lisa machado is the executive producer of healthing.ca. follow her @iamlisamachado.

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lisa machado

lisa machado began her journalism career as a financial reporter with investor's digest and then rogers media. after a few years editing and writing for a financial magazine, she tried her hand at custom publishing and then left to launch a canadian women's magazine with a colleague. after being diagnosed with a rare blood cancer, lisa founded the canadian cml network and shifted her focus to healthcare advocacy and education.

machado: advocacy needs to be protected, whether it happens in an organization or at a kitchen table

advocacy takes a certain amount of badassery. isn't it time that we reimagined a system that not only supports and acknowledges patients and caregivers but also makes it easier for them to make big change?

machado: caregiving can be traumatic. but why do we feel so bad saying it out loud?

machado: my doctor thinks i am complicated

advocacy doesn’t leave much time for breaks

why do we have to convince others that patients and caregivers are experts in their care?

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machado: advocacy needs to be protected, whether it happens in an organization or at a kitchen table

advocacy takes a certain amount of badassery. isn't it time that we reimagined a system that not only supports and acknowledges patients and caregivers but also makes it easier for them to make big change?

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