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machado: the identity crisis that happens with a serious diagnosis

in the process of bridging the gap between who you are before the diagnosis and the person your experience molds you into, those who are happiest seem to be the ones who land somewhere near the middle.

by lisa machado

published jan 09, 2023

last updated mar 12, 2023

5 minute read

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5 minute read

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a diagnosis often leaves people wondering where they fit in

once you have a health issue, particularly one that’s life-affecting and life-changing, you are no longer who you were before — not to yourself or to others. getty

“i feel like i am having an identity crisis.” i could only see a fuzzy outline of her lips as she spoke — the yellow drops she put in my eyes had made my vision blurry and my eyeballs numb. it had been a few years since my last eye exam, and the optometrist and i were catching up: kids, covid, dogs, covid again and then … cancer. that day marked six months since her final chemotherapy treatment for stage 3 breast cancer — and though she was told that she was in remission, she was also aware of the high probability of recurrence.

“i am scheduled for rechecks for the next five years,” she said, shining a blinding bright light into my left eye. “so what does that make me? am i a survivor if i’m not completely free from cancer? am i a patient? or do i just ‘live with cancer?’”

she went on to say that her nine-year-old daughter tells her friends stories of her mom being sick, but that, after taking lots of medicine, she is alllllllllllllllll (dragging out the l’s) better.

“maybe that’s what i should tell people,” the woman said, with an almost-laugh, along with a forced smile — as you do when you are completely faking nonchalance. “i am allllllllllllll better.”

an identity shift happens when you get a diagnosis

it’s one of the toughest emotional challenges for someone living with a serious health condition: the shift that happens in one’s identity the instant there’s a diagnosis. after all, there’s no denying it, once you have a health issue, particularly one that’s life-affecting and life-changing, you are no longer who you were before — not to yourself or to others. for me, the transition from healthy and resilient to sick and vulnerable — all in the mere seconds it took a doctor to explain my disease — was, well, a lot to come to terms with.

from that moment on, i could no longer shake my head with pride when i was asked if i had any health issues, or if i took medication. people who knew me began to go out of their way to ask how i was feeling and comment on weird things, like the colour of my skin and my weight. at the cancer clinic, nurses checked my plastic wristband for my name instead of talking to me. i was still a mom, a writer, a daughter and a sister, but overshadowing everything, it seemed, was the fact that i was now someone who had cancer.

and as time passed, i met other people living with cancer, each trying to bridge the gap between who they were before their diagnosis, and the person their disease experience had molded them into — those who seemed happiest were the ones who managed to find a comfortable spot in the middle, taking pieces from each self to build a new identity that worked for them.

a lot of this reconstruction had come with a ton of tearing down and rebuilding depending on how they perceived their disease and its impact on their life, but also how they saw themselves within this new construct — a construct that they were completely powerless against. much like how the optometrist was bothered by her inability to confidently label her post-cancer self, the people i met painfully vacillated between identifying as a survivor, a patient, sick or healthy, not knowing quite where they fit in.

and of course it was important — naming their experience helped to regain some of the ground the disease had taken away. i felt it too. as someone with a cancer that will be treated with medication for the rest of my life, in the early days, i also wasn’t sure where i fit. it’s hard to call yourself a survivor when there is still cancer in your body, when the threat remains. at the same time, being a patient also comes with its own list of criteria.

then again, if i go by what a friend counts as surviving, which is just getting out of bed every morning, then a survivor i am.

the thing is though, people facing health challenges do best when they can define themselves on their own terms. consider a recent survey by u.s.-based curetoday.com, which provides education and support to people who have experienced cancer. asking readers with cancer to share their opinions on what they preferred to be called — suggesting options like survivor, thriver and patient — the findings showed that labels are a pretty big deal, and also, really individual.

one respondent, treated for prostate cancer, and who has no evidence of disease currently, said that he preferred to be known as a “cancer survivor living with fear of recurrence.” another, living with stage 4 ovarian cancer, considered herself a patient and not a survivor, which she defined as someone who is “finished treatments, is evidence free of disease and is done.” other preferred labels included “cancer rebel,” “lifer” (submitted by someone with incurable cancer) and from a woman with stage 4 rectal cancer: “alive. call me alive and the rest doesn’t really matter to me.”

certainly, how anyone perceives their cancer experience is very personal, and it’s influenced by everything from society and the labels our health-care system puts on people and conditions, to our own knowledge, past experiences and the physical and emotional costs of our illnesses.

and giving the people in our lives who are facing health challenges the space to define who they are within their experience is so important — not only to help them build their post-diagnosis selves, but also to nudge them forward, no matter what happens.

personally, i like the “alive” label the absolute best. but i’d have no problem with “the cool girl” either.

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: the identity crisis that happens with a serious diagnosis

in the process of bridging the gap between who you are before the diagnosis and the person your experience molds you into, those who are happiest seem to be the ones who land somewhere near the middle.

an identity shift happens when you get a diagnosis

machado: regrets, have you had a few? perhaps too many to mention?

machado: my doctor thinks i am complicated

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machado: the identity crisis that happens with a serious diagnosis

in the process of bridging the gap between who you are before the diagnosis and the person your experience molds you into, those who are happiest seem to be the ones who land somewhere near the middle.

an identity shift happens when you get a diagnosis

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