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machado: would you keep a scary diagnosis a secret?
8 minute read
there is a cost to a serious illness that goes beyond simply the possible loss of life. it changes everything, shatters relationships, careers, mental and emotional health. getty
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“i have a friend of a friend who is pretty sure she has cancer, but she isn’t going to tell anyone, because then she will be ‘the sick one,’ and things will get weird.”
this from a dad who i know from working on the fun fair when my kids were in elementary school. our paths crossed in front of the local grocery store — where everything is $5 more than anywhere else in the city. we were heading in opposite directions.
the conversation started out as one of those keep-walking-while-cheerfully-calling-out-“nice-to-see-you” things, but quickly became laser-focused on cancer as he doubled-back, offering to help me with the very full and very heavy bag i was carrying.
he said his friend was waiting for some test results, but that it looked like it was cancer. she had already decided that telling people was too risky in terms of maintaining normalcy among her friends and work colleagues, so she was keeping it a secret. plus, he said, as he stooped over to pick up an avocado that had bounced out of the bag, she had to think of her kids. she didn’t want to “freak them out.”
as we walked, he confessed that his “friend” was actually his wife. the expected diagnosis? a common blood cancer. they just didn’t know yet if it was the one that was easily treatable, or the one that involved scary discussions about life-altering side effects and poor prognosis.
if you have read some of my other stuff, you know that we’ve been here before. it’s one of the uncomfortable ironies of being diagnosed with a scary illness: at the same time as you are feeling sick, scared and completely overwhelmed, you are often also facing the task of managing the fear, worries and perceptions of those around you — making others feel better. this woman, however, was choosing not to take this on. instead, she planned to keep the news all in the family, with the exception of her young children.
at the same time as you are feeling sick, scared and completely overwhelmed, you are often also facing the task of managing the fear, worries and perceptions of those around you — making others feel better. it’s why some choose to keep their diagnosis a secret. getty
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he rhymed off the implications of sharing her diagnosis with others: uncomfortable friends who no longer come around because they don’t know what to say, playdates that dry up because families worry about imposing, or worse, that their own children will become scared and worried, and work colleagues who decide that she is not up to the responsibilities of her job, and thus stop engaging her. his voice cracked with fatigue. we talked about what a shame it was that she couldn’t just take this time to focus on herself and doing what she needs to do to prepare for what might very well be the fight of her life, instead of worrying about what others would think.
years ago, at one of the first patient and caregiver meetings that i hosted for people living with leukemia, i met a woman who had been diagnosed five years before. the group, about 50 people, had been talking about how they shared the news of their diagnosis with others. after listening to stories of serious discussions at kitchen tables and over coffee, and the countless long-distance phone calls, the woman stood up, clutching a small blue purse in one hand, and some balled-up kleenex in the other, and began describing her life since starting an oral treatment for blood cancer.
by all accounts, she was doing really well — her disease was controlled with medication, the side effects were minimal, and there had been virtually no disruption to her life. in fact, she shared that not only had she run a few marathons since her diagnosis, she had also been promoted in her job. it all sounded so good — so much so, that an older man who had been sitting slouched in a chair beside her, arms crossed with a faded ball cap pulled down over his eyes, leaned over and said very seriously, that he was deeply jealous. but what came next made him sit up and turn his cap backwards so he could take a good look at her.
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she said that she was married to her high school sweetheart. he was an engineer who travelled a lot. she also had three teenage daughters, and a dog and was very close to her elderly parents — but no one knew that she had cancer.
“it was easier not to tell anyone,” she said. “my mom would be devastated, the kids would worry and my husband would treat me differently.”
there were so many questions. first, there was intense curiosity about just the simple logistics of keeping such big news under wraps. what did she say when she was going to doctor’s appointments? where did she hide her medication? what about the frequent blood tests, didn’t anyone notice the tiny red hole in her arm?
then came the judgey opinions. it was unfair and selfish to not include those who loved her, a few people said. after all, wouldn’t she want to know if her husband was dealing with a serious health issue? and of course, someone had to go to the dark side: “what if you get sick and die?” they asked, with a little snark. “that’ll be a surprise.”
the final word went to a young woman who had been sitting quietly at the back of the room: “poor you though,” she said kindly. “to have gone through all of this without your closest people by your side. that takes guts.”
after a story in a local paper quoted me about my thoughts on the costs of cancer medication, a neighbour passed my kids and i as we ate ice cream on a patio and said solemnly that she was very sorry that i was sick. getty
putting aside the fact that who you tell and what you share about your health is a very personal decision, and quite honestly, no one’s business, the discussion was an excellent illustration of the potential personal cost of a serious illness that goes way above and beyond simply the possible loss of life. a serious diagnosis changes everything. it can shatter relationships, careers, mental and emotional health.
and at the end of the day, the one ultimately making the decisions and the choices, the one lying awake at 3 a.m. sweaty and breathless with fear and uncertainty, the one who feels alone, isolated and sick, the one left picking up the pieces, is the patient. and for sure, you can also become an “other” — the “sick one,” as the husband put it. so in the midst of all of this heaviness, isn’t it a shame that managing the responses of others is also on the to-do list, right alongside surviving?
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unlike the woman at the meeting and my friend’s wife, and like many others with cancer, i was very open about being diagnosed with leukemia. i don’t know that it was a conscious choice though. it was more a response to my feelings of being powerless. talking about it, whether to my friends or to reporters who would interview me about what it’s like to live with cancer, to depend on expensive medication to live, and to suddenly realize that i might not live forever, telling stories was the only way i knew of to process what was happening to me. but it didn’t come without a price.
most of the time, people responded in ways that fuelled my hope: “i will walk this journey with you,” is what one friend said. others bravely asked questions about treatment and wanted to know how was i feeling, even though i knew that i reminded them of their worst fears.
but there were also the longtime friends who stopped calling, who disappeared and never came back, the ones who felt the need to see their doctors and get checked for cancer — because after all, if it could happen to me, it could happen to them. and then there were the ones who couldn’t handle my uncertainty, unable to stop themselves from asking about my prognosis, commenting on the risks of long-term cancer medication or forwarding articles about the purported benefits of wheat grass and boiled tree bark.
“i didn’t know you were sick, mama”
and then there was the impact on my kids, who, from the very beginning, understood that my “blood was sick and needed medicine.” they joined me for my appointments at the cancer centre, sat on my lap reading books about cars and wizards while i had blood taken, getting a lollipop on the way out and developing a relationship with my oncologist along the way that exists even today. to them, cancer is figureoutable — and i love that.
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still, they have witnessed time and time again, the withering looks and overly sympathetic questions from people we’d run into on the street or at the playground. once, after a story in a local paper quoted me — along with a photo — about my thoughts on the unaffordable costs of cancer medication, a neighbour passed my kids and i as we ate ice cream on a patio and said solemnly that she was very sorry that i was sick and that she hoped things turned out ok. when she walked away, my son looked at me confused.
“i didn’t know you were sick, mama.”
professionally, i had heard enough stories about people with cancer whose jobs had mysteriously been eliminated after they submitted their first claim for expensive medications, or who were offered a demotion veiled as a “new and exciting” position after taking a series of sick days, to know that having a potentially life-threatening disease isn’t a quality that gets your resume to the top of the star candidate heap. a guy i know who has been living with lung cancer for about a decade likes to say that no boss wants an employee whose odds of dying sooner rather than later are 100 per cent. fair enough, i guess.
by the time the husband and i reached my house, the avocado had fallen three more times, breaking the skin, and he was breathing a little heavy under the weight of the bag — or maybe it was the realization of the load that he was now sharing with his wife. he asked me to keep the news quiet. “she made me promise not to tell anyone,” he said, a little sheepishly, rubbing his hand where the handles of the bag had made red grooves in his skin as he walked further down the street.
there are a lot of things that i hope for when it comes to scary diseases like cancer. that everyone can get the treatment they need to survive; that everyone with a diagnosis gets the love, support and compassion they need to withstand the fear, pain and uncertainty, along with a health-care professional who, without question, has their back; and that more patients can let go of the feeling that they are somehow responsible for the opinions and perceptions of others when it comes to their illness and feel freer to focus on themselves while those around them allow them to do so.
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oh, and that whatever hit your health and well-being takes, that strength and hope can be found in the belief that some way, somehow, it’s figureoutable.
lisa machado is the executive producer of healthing.ca.
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