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machado: telling your 'sick' story isn't always a way to make friends
6 minute read
positioning your person on a toilet, or changing their diaper, or maybe feeding them and wiping food from their chin — it's an uncomfortable dynamic that many of us don't have the words or stomach for.
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last year, a man from calgary wrote to share a story about what it was like to be the only caregiver for his wife, who had slipped on ice and broken her hip in several places. doctors didn’t think she would ever fully recover.
“frank,” who has been married for “eons” (his words), began his email describing how in control he was of the situation, that he had her care down to a careful well-scheduled science: at 6 a.m. he wakes up with his radio alarm (the cbc so he can “know what’s happening in the world”), rolls out of bed gently so as not to disturb his sleeping wife, showers and dresses quietly, and then it’s off to the kitchen for a coffee and a piece of toast — or oatmeal, the quick kind, if he’d forgotten to pick up bread on grocery day. he said he has about a half-hour before his wife calls for help — help to get out of bed, help to get to the toilet, help with bathing, brushing her teeth and hair and getting dressed. then it was a careful shuffle to the living room couch, and “we’re off to the races,” he said, with every minute used up from then on, sometimes frantically, between doling out pain meds, exercises and meal prep, until 9:30 p.m. when they fall into bed, exhausted, only to do it all again the next day.
by the third paragraph, using words like “difficult,” “tiring,” and “sad,” it was clear what his message was: that as smooth as it all sounded, it was hard and lonely to be a caregiver. but that wasn’t the whole story. he said that on the advice of his doctor, he shared how he was feeling with some of his close friends — the ones he used to golf with three times a week before his wife’s fall. over a beer, “a lager, the kind with bite,” he described his frustration and fatigue, his increasing disdain for helping his wife with toiletting (even though he loved her deeply), and how small his world suddenly was.
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“my pals were great at first,” he wrote, describing how their wives would visit to keep his wife company so that he could fit in a round of golf each week. they would sometimes bring a couple of meals or dessert or a decorating magazine — his wife’s favourite. part of their visits sometimes included helping her to the bathroom, tying her shoes and rubbing lotion on her very dry feet. but it all stopped after a few weeks, he said. first, one friend cancelled a couple of golf dates, and then, after several half-assed excuses, the wives stopped visiting. he said that he had considered asking his golf buddies if everything was ok, but following a few awkward phone calls and one embarrassing sighting of them sitting together in a local restaurant, he was thinking of giving up hope of ever reconnecting.
oh man. if only illness had the power to inspire warm and fuzzy feelings in everyone, all the time. certainly, there are people who step up, arms and hearts and wallets open to support others in sickness, just as they would have in health. but for most of us, sick is a state of mind and body that’s hard to take. the person you once knew as fun and entertaining and happy might now be frail, scared, vulnerable and in need of serious help. and if you are the one providing care, well, like the golfing man, you are now on deck for limitless tasks that can be overwhelmingly taxing and awkward for both of you. positioning your person on a toilet, or changing their diaper, or maybe feeding them and wiping food from their chin — it’s an uncomfortable dynamic that many of us don’t have the words or stomach for. and to listen to stories about it? even less.
sick changes everything.
his story reminded me of the many i have heard over the years from people living with cancer — painful tales of friendships fractured and relationships lost because the sorrow and uncertainty of disease was too much to take. for some, a loved one’s diagnosis reminds them of their own mortality, makes them anxious about their own health or is simply a “downer,” as one patient’s husband once said when asked what the hardest part of his partner’s cancer diagnosis was. their friends just stopped coming around. after all, there is nothing sexy or hot or fun about illness, especially the really scary kind.
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but the ones doing the “othering” are not confined to close family and friends or romantic relationships. it also happens in workplaces between colleagues and bosses — even a job search while living with an illness or caring for someone can be isolating.
and then there’s the impact that illness has on the person who is sick. it’s a roller-coaster of emotions that messes with your head as you struggle between the effort it takes to be vulnerable (you don’t want to have to need help getting to the toilet either) or sad — which often makes others uncomfortable and unsure of what to do and say — and the natural tendency to buck up, fake it and be “fine” to make those around you feel better. in both cases, you are the one who is left lonely, disconnected and without the support you might need.
so what’s someone who is sick or taking care of someone who is sick to do about maintaining relationships and those important connections that keep us on solid ground while managing our physical and emotional health? well, there have been many studies and discussions about illness and loneliness and the sense of disconnection from peers when you or someone close to you is seriously ill. one study notes that chronic illness limits “opportunities for belonging, social valuing and inclusion,” and concluded that in order for relationships to continue to work, there is a “trade-off of one social gain for another.” that there must be a balance between focusing on making connections happen and the acknowledgment of the reality of the person with the illness. in other words, in order to maintain relationships, people with chronic illnesses cannot be fully authentic.
it’s similar for those in a caregiver role — let’s be honest, even the most giving and empathetic friends have a limit in terms of how much they can talk about fear, sadness, pain, loneliness, and well, diapers. the result is isolation that contributes to anxiety, distress, depression and loneliness. isn’t it ironic though that social support and connection is what most of us crave (need!) when we are sick or managing the care of someone we love, yet, for numerous reasons, they are also the most difficult holes for those around us to fill?
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earlier this week, there was another email from the man letting me know that he had joined a caregiver support group at a local community centre and felt “glad” and “happy” for the first time in a long time. the people there laughed about toilet talk, he said. “they know what it’s like.” he also talked about the golf dates that are lined up for the spring with his buddies.
“i don’t plan on talking about my wife,” he wrote, signing off with a delightful riddle and smiley emoji.
this was his p.s.: “sometimes, we look for the love we need in all the wrong places.”
lisa is the executive producer of advocacy & better health. she can be reached at lmachado@postmedia.com.
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