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machado: my doctor thinks i am complicated

my family doctor is retiring, just as he begins to understand how lived experience affects a patient's perspectives on health.

by lisa machado

nov 14 2022

8 minute read

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understanding lived experience equals better care

understanding lived experience is critical in order for a family doctor to treat the whole patient. getty

i found out this week that my family doctor is retiring. and though his last day was friday, he said he was keeping his most “complicated” cases for a few months more.

“i hope i am complicated,” i said, laughing. there was quiet on the other end of the line.

“well, yes,” he said. i could hear the smirk in his voice.

in the almost twelve years we have known each other, he has seen me through some challenging health issues. he was also there with advice when i wondered if my dad — who was in a coma — could hear me talking to him. and when my brother died unexpectedly, he answered empathetically and honestly when i asked if my brother felt pain before his heart stopped.

it’s a good relationship, but not one that came easy.

when we first met, i was a transfer from another doctor in the family practice office who was leaving the country to practice in africa. the change came at one of the most challenging points in my life: i had very young children, my father was diagnosed with dementia and i was just months into a chronic leukemia diagnosis, grappling not only with side-effects from chemo medication and the anxiety of waiting to see if it worked, but also trying to figure out how to live without being consumed by fear and worry that my health might actually go sideways sometime soon.

after a quick introduction and a handshake, he asked about my family history. i had difficulty talking about my dad — i was very sad that he was sick, but also extremely stressed helping my mom with his day-to-day care and also being there to absorb her sadness, worries and uncertainty. i was also fearful that maybe there was a genetic component to his brain disease.

i told this new doctor all of this with heartfelt honesty and i don’t remember there being tears, but i am sure my voice was wavering and my hands were sweaty.

he sat with his back to me

he sat with his back to me, facing a computer, typing what i was saying into a document that would sit in my file. the back of his head with its curly white hair nodded occasionally. and when i stopped speaking, he turned around and agreed that what i was going through was tough. then he stood up to leave, and said that it was unlikely i was at risk for dementia more than anyone else, and besides, “there was nothing i could do about it, so why worry now.”

hmm. let’s just say we had a bit of a rough start.

and it wasn’t like i was expecting roses and rainbows. after all, my brother had spent most of his life in hospitals, with me tagging along in my pyjamas because it was usually the middle of the night. there tended not to be a plethora of anything flowery or magical when it came to feedback on patient and caregiver concerns.

plus, the appointment wasn’t my first rodeo — he was number five in a series of gps i had seen since i was a kid. like most people seeking health care, i knew intuitively what it would take to feel comfortable that my health-care provider had my best interests at heart — and a pat comment about simply not worrying wasn’t it.

in truth, between my dad’s diagnosis and the leukemia, my confidence in my health was shaken and i was on high alert for the next big thing — a new cancer or some degenerative disease. my brother would soon be told he had liver cancer. it seemed like anything was possible. if i had any health anxiety before leukemia, it had been pushed over the edge to a place that made it imperative that i make a plan to ensure i felt safe and prepared for the worst. he was my plan.

when i left that day, my face felt hot, burning from the effort of baring my deepest fears and health concerns, and then doubling back with jokes and apologies when it was clear that not only was he not listening to me, he wasn’t taking me seriously.

how would i find a doctor when wait-lists are staggering?

and sure, i knew that i didn’t have to become his patient. i could embark on the onerous task of finding someone in a city where the wait-lists for a family physician were staggering. i could have also done what many of my friends had done and instead of getting a gp, make use of the local walk-in clinic for the little things and the emergency room for the bigger things.

as i filled out the “new patient” form at the registration desk, the receptionist smiled, making small talk about how lucky i was to have a doctor in the city. we both knew that the nodding back-of-the-head was probably as good as it was going to get.

and though i didn’t realize it then, looking back over the years, that first appointment was the beginning of an important education process for both of us — something that he now mentions often.

as i moved through life with leukemia, there were weeks i would see him two times (he isn’t paid per visit), overwhelmed by symptoms that troubled me, like swollen lymph nodes or strange rashes. often these were shrugged off as insignificant, the results of a lack of sleep, a cold or maybe i had eaten something that was off. never did i have the opportunity to share and talk through what worried me most about the lymph nodes (that the cancer was back) or the rashes (that the cancer was back).

when the leukemia was under control, other unexplainable symptoms popped up — numbness in my face, a jaw that locked closed for six months, random abdominal pain. sometimes he referred me for further testing, sometimes he told me not to worry — an unhelpful response at best. at worst, it contributed to a fear that maybe something was being missed which was a terrible feeling.

once, a few weeks of a continuous period brought me to his office. he shrugged it off as stress. and when i asked what the odds were that it could be uterine cancer — i was a health writer, after all — he said that if it was uterine cancer, it’s usually caught too late anyway. that day, i pushed for a pap test and when it came back abnormal a week later, he called me in.

“i get it. your experiences impact your perspectives on health”

it turned out that he had had quite a week with patients who were suffering with the aftermath of trauma, he explained. one was a young woman who had been attacked in her garage years ago and she was left with a paralyzing fear of garages and underground parking lots. then there was a young man home after fighting in iraq who couldn’t walk near a sewer grate without having a full-on panic attack. finally, he described a woman in her fifties who had spent ten years caring for her mother who had an aggressive form of multiple sclerosis. she was convinced that she also had ms — even though every test showed she was fine. she insisted on walking with a cane, just in case.

“i get it,” he said, leaning forward in his chair, his elbows resting on his knees. “your diagnosis, your brother, your dad … all of this impacts your perspective on your health. it makes perfect sense that you want clarity sometimes. i want you to come in whenever you are feeling anxious or uncertain and we’re going to talk it out.”

we spent the rest of the appointment planning the next steps to investigate the abnormal pap test (which in the end turned out to be a false result) and from that day on, whenever we met, he listened to my symptoms and then asked me what i was most concerned about. he never told me not to worry — unless it was a genuine message that all was really fine. we had some laughs as i shared my most ridiculous worries — “could the mole on my toe be toe cancer?” other times, he would crinkle his bushy eyebrows as i described a pain in my chest or a headache that wouldn’t go away, and say, “i’m not worried, but i see that you are, so we’re going to get it checked.”

this first open two-way discussion was a turning point in our doctor/patient relationship — revelations from which he says he shares with the medical students he teaches a few times each week: the understanding that patients sometimes bring with them precious baggage that must be unpacked in order to provide care that best meets their needs; that listening without judgment is part of what it takes to be a good doctor; and that looking at worries and fears through the lens of the patient or caregiver is just as valuable as what can be found in any scientific journal in order to get an accurate diagnosis.

now that both my teenage kids see him too, making a point of advocating for appropriate care and respectful discussion that takes into account their experiences — and what they are most deeply worried about — has become even more critical as they look to me for guidance on navigating a world that is often daunting and intimidating. i would even argue that it’s a skill — a skill that lives often depend on.

“you’re complicated because of your lived experiences, and i want to make sure that’s understood going forward,” he said, referring to the new doctor who is in the process of taking over his practice.

it feels like a little bit of a win that we have finally gotten to the point that we are openly talking about the impact and importance of lived experience, and i can only hope that other patients are hearing a similar message. still, there is something bittersweet about the possibility that all it took to get here — literally blood and tears — may be lost when he finally hangs up his shingle.

i shared that concern when he asked what i was thinking.

“don’t worry about it,” he said, laughing as he hung up.

we want to hear your story: do you have a story you want to share about the relationship you have with your doctor? what have been your challenges in communicating the care you need? do you think your doctor takes you seriously? and do you have advice on how to talk to your doctor so that you can be heard? we want to hear from you … your insights may appear in next week’s newsletter.

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.

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“i get it. your experiences impact your perspectives on health”

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machado: my doctor thinks i am complicated

my family doctor is retiring, just as he begins to understand how lived experience affects a patient's perspectives on health.

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he sat with his back to me

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how would i find a doctor when wait-lists are staggering?

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“i get it. your experiences impact your perspectives on health”

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