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machado: stop assuming that lived experience is the same experience

even if the health condition is the same, the treatment and side effects identical, successful sharing of lived experience means never assuming that everyone's perspectives match.

by lisa machado

jul 31 2023

6 minute read

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understanding lived experience means not judging anyone's feelings or making comparisons. getty

the first time i attended a support group meeting for people living with the same rare blood cancer i had been diagnosed with, i was so excited. it was about a year after i had heard a young resident hematologist tell me that i had leukemia, and my world had not yet come to a standstill after being rocked by that terrifying diagnosis. i was scared — the uncertainty about my future was keeping me up at night. during the day, it brought tears to my eyes when i felt my children’s soft arms around my neck because i desperately hoped i would see them grow up.

but i was also feeling alone, misunderstood and frustrated that my oncologist didn’t understand the emotions that a scary diagnosis churns up: “you got the lucky leukemia,” he’d say, gesturing with his hand to the waiting room that was on the other side of the door, full of people dozing off in wheelchairs, shirts unbuttoned to make room for the tubes that attached to the port just under the skin of their chests. he figured he was comforting me with thoughts of what could have been, but in fact, he was upping my anxiety by reminding me of what could be.

it didn’t help that i had never met another person who had the same blood cancer — he would talk about survival, but there was no living proof, other than what i could find online, and well, i needed more than that.

but that day in a room full of fellow patients, i got the proof i needed. in seconds, i found the space to take a deep breath and allow myself to consider that things might actually turn out ok, and that even if they didn’t, there was a community to support me. the most impact came in the form of two women sitting near me who had been living with leukemia for more than 15 years — 15 years! — and doing pretty much everything they did before their diagnoses. they shared their fears, anxieties, how they managed side effects and advice on what to tell friends and work colleagues. there was no judgment around anyone’s feelings or comparisons of how the disease affected one person versus another. some people considered the disease a killer, others brushed it off as benign. within all that was the same about us, there was room for all that was different too. those moments changed everything for me.

patient-centred, lived experience has become buzz words

at the time, there wasn’t really an official name for what happened in this room that day: the passing of strength that seemed to happen almost kinetically; the unique power that came from spending time and trading thoughts with people who share your experiences; and the warm comfort that hung in the air that signalled to everyone that finally, we had found our peeps.

but as the years passed, terms like patient-centred, authentic partnerships and lived experience began popping up in language used by health care providers and pharma companies. they were figuring out what patient groups had known all along: that sharing experiences was magic, vital to not only the well-being of patient and caregiver communities, health outcomes and the ability of health care providers to meet patient needs, but also critically valuable in terms of easing feelings of isolation, propping up mental health and helping people to manage their health better.

today, the sharing of experience is everywhere, and, for the most part, it’s a good thing. a quick search on social media will confirm that you are not alone in pretty much any challenge you are facing. from adjusting to losing a limb and living out a terminal illness, to mourning the loss of a child and managing a rare neurological disease, there’s someone out there who gets what you are going through.

but while storytelling is a powerful thing — heck, healthing’s success has a lot to do with giving human stories a loud voice — the value of lived experience lies not just in the sharing. in fact, it’s arguably a very small part. it’s actually how it all ends that matters most — what’s the takeaway?

someone else’s story is not my story

this point came up in a conversation that i walked into at my local gym last week. three sweaty women, faces flushed red, were sitting on the stairs that led up to where the classes were held. in between long gulps from plastic water bottles, they talked about an dietitian they follow on instagram — “body happy” is how one woman referred to her — and how annoying they found it when she posted videos of herself showing her belly, cellulite and wrinkles, along with sighs of oh-wells and messages of acceptance.

“it’s supposed to be encouraging, i get it,” said one woman, squeezing the skin around her waist. “but that’s not my story. i don’t accept my belly, or my cellulite or my wrinkles and i don’t want to feel bad about it.”

one of the other women, who had been massaging her knees while munching on an apple, laughed, pointing out that this dietitian often emphasized that being happy with her body and not caring what other people thought was a sign of her strength as a person, her confidence and intelligence, and that those unable to feel the same were just not doing it right.

“yep, i’m thrilled that you’re thrilled with your body, goody for you,” she said, rolling her eyes. “but why are you making me feel like there’s something wrong with me for not being ok with mine? like i’m vain, or being childish or silly, trying to get on board with the hot girl summer thing, or something. pleeeeeeze.”

their bitter conversation was a pretty good reflection of the benefits of shared experience going south. today, more than any other time, we’re learning about the beauty and health of larger bodies — kate moss, pshaw. body positivity has been called a “social movement” and it focuses on acceptance and self-love rather than trying to fit into socially-constructed models of what a “perfect” body is. artist lizzo is just one popular example of someone shining a spotlight on the importance of celebrating different bodies. (in 2020, she told vogue that she feels the term body positivity “has been commercialized and appropriated” to the point that it no longer applies to the people it was meant for, so she uses “body-normative” instead, that is, the goal of normalizing different bodies.)

take what you want from lizzo’s experience

but say what you want about the story — it’s the takeaway message that’s key. spend a moment watching lizzo perform and you’ll see a talented artist who is confident, physically strong and energetic. and while her experience in a larger body may mirror someone else’s, the perception of what it means may not be the same, and she’s ok with that. her message isn’t at all about one body being better than another, or even accepting what you are unhappy with. in fact, none of that factors into what she represents. she is not like the “body happy” lady, squeezing cellulite, zooming in on a sagging belly and pointing out wrinkles. rather, lizzo uses words to encourage inclusivity and self-love, sending fans a positive message about health, nutrition and emotional wellness. take what you want and leave the rest. this is what makes for the successful, effective sharing of lived experience.

take a group of people living with the same cancer as an example. the diagnosis story may be similar (“i had a routine blood test,” or “i found a lump”), therapy side effects matching and worries identical. yet not everyone’s experience and perception of that experience will be the same. one person might be overwhelmed with fear, while another may have found happiness despite everything. maybe one person’s disease keeps them in bed for most of the day, while someone else manages to take long trips, compete in marathons, and run their own business. and that’s ok. successful storytelling acknowledges that everyone’s shared experience is not the same experience. stories are told and ideas communicated — take what you want and leave the rest.

and ideally, unlike the “body happy” dietician whose stories and takeaway messages sting of judgement and assumptions, it’s all so good that you can’t bear to leave anything behind.

lisa machado is the executive producer of healthing.ca.

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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: stop assuming that lived experience is the same experience

even if the health condition is the same, the treatment and side effects identical, successful sharing of lived experience means never assuming that everyone's perspectives match.

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opinion: reshaping canada's caregiving system

patient-centred, lived experience has become buzz words

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machado: stop assuming that lived experience is the same experience

even if the health condition is the same, the treatment and side effects identical, successful sharing of lived experience means never assuming that everyone's perspectives match.

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