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machado: having an 'easier' time with a disease doesn't make it any less awful
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everyone experiences health issues differently, even if the disease is the same. getty
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“you don’t have to remind me.”
the voice was shaky, but loud, firm and certain. beneath the warm lights on the stage, i could only just make out the outline of short hair and arms that were tightly crossed. i was one of five people sitting on squishy white leather chairs on a stage, with little black microphones clipped to the tops of our blazers and expensive bottled water lined up at our feet.
we — two cancer specialists, a caregiver, a director of a european cancer support group and myself — had been invited to share our thoughts on the cancer experience and how canada’s healthcare system can make what it means to live with this relentless disease better. the room was packed, standing room only. the organizer had told me that morning she had never seen such a great turnout for the topic. in the audience was a mix of people living with cancer, people who cared for people with cancer, people who had lost loved ones to cancer, healthcare professionals and a handful of policymakers.
why do we call some types of cancer “lucky”?
doctor #1 was on my left, a shiny-faced 40-something man whose hands shook nervously when he spoke. he would cross and uncross his legs — showing bright socks with elmo printed on them around his ankles. he had just wrapped up a 15-minute soliloquy about how not every cancer experience is the same, how some types are “lucky,” and well, people who are struggling with accepting their disease should just think about those who have it worse.
oh geez.
this, after the group leader and i opened the conference with stories about the mental and emotional impact of living with a disease that kills people, how the fear never leaves you, how loved ones struggle and relationships crumble — how it changes everything. we left comparisons out of the equation because, first of all, stacking one person’s cancer up to another’s as a measure of impact, isn’t helpful. it can also be a damaging exercise that sets patients and those who care about them back in terms of emotional and mental resilience.
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the woman had her eyes steady on doctor #1 as she explained that she lived with a cancer that was chronic. with regular infusions, the disease had been kept under control for six and a half years, she said, adding that she was grateful. this treatment meant that she was able to continue running her own business, she was learning spanish and just celebrated her 48th birthday at a spa with her seven closest friends.
but she also talked about how the diagnosis caused her to develop post-traumatic stress, that she couldn’t sleep most nights and how two years into her treatment, her husband and high school sweetheart, the guy who, as she described, “made every minute of every day perfect,” left because it was all just too much.
“am i lucky?” she asked. doctor #1 crossed his legs a couple of times as she paused for effect. “of course, i’m grateful for medication that lets me live. and yes, other people have cancers that are way worse, i get it, i’m not dead and you don’t have to point it out. but even though i am not dead or dying — yet — i have lost so much.”
comparing yourself to others leads to feelings of isolation
there was a few seconds of silence and a bunch of heads were nodding in the shadows. she went on to describe the sense of isolation that comes from being compared to those who are facing something more serious.
“it should make me feel better to know that i could be in a much worse situation,” she said, inhaling loudly. “but when people remind me, and i know they mean well, but it only makes me feel more worried, more fearful, and like a horrible person because i seem like i don’t appreciate what i have.”
she ended her comment by asking that doctor #1 stop focusing on reminding patients that it could be worse, and instead, show compassion and empathy for their experience, feelings and where they are mentally and emotionally, regardless of the state of their health. any serious health issue comes with a cost, she said, as she plopped herself down on her chair.
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“you don’t need to remind me,” she said. “because every night, i sleep alone.”
and it’s not necessarily that doctor #1’s comments were incorrect. after all, the guy treats aggressive cancers that take the lives of his patients all the time. he has seen how dark cancer can get. so naturally, he’d take an optimistic, pull-up-your-socks approach to a cancer that can be lived with.
plus, it’s not strange to gravitate to comparisons when you are trying to measure the impact of something — even more so when you want to use positivity to make someone feel better. humans look to others for information on how to think, feel, and act. it’s a fundamental human tendency, according to experts. but that doesn’t mean it’s a good thing. when it’s us comparing ourselves to others, it can lead to low self-esteem, depression and unhappiness. when it’s a doctor dismissing a patient’s worries, concerns, or emotional state by comparing the seriousness of their disease with another person’s, the effect can be devastating, creating feelings of aloneness, disconnection, and isolation.
i was reminded of the woman with the short hair earlier this week after i received an email from someone who was interviewed by healthing’s editorial team about her experiences caring for her husband who has amyotrophic lateral sclerosis (als). als is a horrific disease that causes the a gradual wasting away of the nerve cells in the brain and spinal cord that control movement. as it progresses, it often becomes harder to walk, speak, eat, swallow, and breathe. clearly, there’s no question that life for this woman and her husband has changed forever in one of the worst ways.
just because your experience doesn’t match my experience doesn’t mean it’s any easier
the disease, which for her husband is genetic, also took the life of his sister. two years in, he continues to be mobile and fairly active, walking their dog, for example. a really great thing, some might say. the journalist who did the interview talked to her about the impact of the disease, but since the story was part of a series that explores the challenges of caregiving and offers readers insights into how to get through their own caregiving experience, the focus was not only on how she was surviving being a caregiver, but also on sharing shimmers of hope and encouragement. the thing was, though, she didn’t want to tell a story of hope and encouragement, she wrote in her email, because there was none. she wanted to tell “the raw, ugly, frustrating, unfortunate truth about being a caregiver in canada.”
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she described the development of migraines and insomnia, and the overwhelming emotional and mental toll of anticipatory grief — when one feels the sadness of grief even before a loss happens. though her husband was still fairly mobile, she knew what was coming, and it was paralyzing.
but what i also took from the letter was a sense of aloneness and determination to communicate that just because he didn’t fit into the typical mould of requiring gruelling round-the-clock care, it didn’t mean that her grief, stress, and worry were any less virulent. that, for her, her experience was exactly that — her experience, and not for anyone else to interpret as hopeful or less difficult or a situation in which she should find encouragement in.
like the woman at the conference, she was reminding us that while her husband’s health was fairly stable at the time compared to what you might expect for this disease, it didn’t do anything to ease the sense of hopelessness or lighten her burden as a caregiver. and though als comes with a very different level of crisis than chronic cancer, her note highlighted that the importance of making space for someone’s personal perceptions of — and feelings about — what they are going through is the same. no one wants their experience to be dismissed.
perhaps we should think of it as just another way of showing empathy, compassion and support. couldn’t we all use a little more of that?
lisa machado can be reached at lmachado@postmedia.com
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