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machado: glass children, glass adults — when illness makes us invisible
5 minute read
illness is like an earthquake, causing seismic waves that engulf anyone connected to the person by love, or blood, or friendship or simply concern. getty
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“there just wasn’t a lot of space for me.”
he sounded young. he said he was 30, and joked about his long beard that was getting in the way of holding his phone between his ear and shoulder as he walked through toronto’s pearson airport on the way to nevada for work.
he had called to tell me his partner had just been diagnosed with a rare cancer and that her doctor had suggested he get in touch to connect with someone who knew what it was like. we started the conversation comparing stories about the path to diagnosis, side effects and how we explained the whole thing to our kids. when i asked him how he was doing, there was silence.
after all, it’s hard to be the one who is sick, for sure, but it’s damn hard to be the caregiver — to be the one responsible for hope when things look dire, the one expected to push back when the patient is too tired to put a foot down, and the one who never gets asked if they are alright. he admitted to feeling down, despite his wife’s good prognosis, describing a sense of powerlessness mixed with deep feelings of loss, anger and, the word that made his voice crack, invisibility. it was hard to put it into words, he said, but he had felt it before.
he talked about his brother, a great guy, he said, someone who had lived with serious mental health issues since he was a child. life with him has been “all hands on deck, all the time,” he explained, describing crisis as being the one constant in life for as long as he could remember. he spoke about his tired parents, endless ambulance rides and hospital visits and how hard he tried to make sure nothing he did or said added to his family’s stress. asking anything of his parents who were already overstretched felt unfair — from telling them about his school play which might seem like pressure to attend, to asking them to take him to buy new shoes were enough to cause him debilitating nausea. and then there was the guilt of being “normal,” while his brother failed at being like everyone else.
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“there just wasn’t a lot of space for me,” he said quietly. “and that’s how it is now.”
this conversation happened just days after my sister-in-law passed on a recent study looking at the lived experiences of people whose siblings had chronic illnesses or disabilities — also known as the “glass children,” a term used to refer to children who are overlooked by caregivers focused on the needs of their sick sibling. the u.k.-based research identified four common themes among these children: feelings of invisibility during social interactions, psychological difficulties, guilt and self-blame.
glass children, glass adults
the concept of glass children is not new. the hashtag #glasschild has had more than 140 million views on tiktok, with the term notably highlighted in a 2010 tedx talk by speaker alicia maples who described glass children as “caretakers” who are “naturally conditioned not to have any problems,” and when asked how they were doing, are “always fine.” the impact of being a glass child has been well-researched, finding that siblings of people with chronic health issues or disabilities face a boatload of challenges, including an increased likelihood of internalizing problems rather than seeking help; trouble with relationships and overall functioning; and a risk of depression. and none of it ended when they grew up, according to maples. in fact, they often carry all of this with them, she says, and it shows up as “addiction, or some other self-sabotaging behaviour, as well as low-self-esteem because they think that validation is seen in the eyes of other people.”
that the bearded guy on his way to nevada made the connection between how he felt as a child overshadowed by the needs of his brother and how he felt as a caregiver to his wife was pretty insightful. there is no such thing as glass adults, or glass caregivers, but maybe there should be. after all, ask anyone in a family or relationship that includes someone who is managing health challenges — caregiver or not — and they will likely describe similar feelings of not being seen, heard, or valued, feeling forced to act like they are always ok, not to mention carrying a deep sense of guilt and self-blame. in fact, research has shown that partners of people with chronic illnesses are unwilling to be honest about the burden of care and they experience a decrease in mental and physical well-being. there is also an uncomfortable sense of being neglected and ignored as the people around them focus only on the person who is ill, not checking on their well-being.
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but that’s the thing about illness — it’s like an earthquake, the core of which begins with one person, but then causes seismic waves that spread outward, engulfing those who are connected to the person by love, or blood, or friendship or simply concern in varying degrees. in fact, some experts have even described the fallout as “suffering” and “distress” culminating in feelings of helplessness, lack of control, guilt, anger and worry.
we should be checking in on caregivers, not just patients
so if we know that close associations with someone who is ill, either as a caregiver, sibling, partner, or even as a member of the same family, can have such far-reaching consequences, are we doing all that we can to protect those who care about people who are facing health challenges? perhaps some of this responsibility lies with healthcare providers — making sure that inquiries about the health of the patient also include checking in on the well-being of the caregiver, the family, the child, or the friend. this means recognizing that often a person’s illness doesn’t happen in a silo — after all, as the bearded guy who was headed to nevada said, his wife wasn’t the only one living with cancer. he was too.
there’s something else, though. people who become the collateral damage of illness also need space — a safe place to leave the hard feelings and dark emotions like anger, fear, overwhelm, guilt, and the sense of unfairness that comes with being stuck with an enormous responsibility that they never signed up for. they need to know that it’s ok, normal, even, to feel all of these things and more importantly, feel able to talk about them without judgment and shame. certainly, that’s something our healthcare systems could do a better job of, making a concerted effort to wrap psychosocial care around those touched in some way by illness, and acknowledge the value of doing so. of course, this would need to be connected to a larger recognition that illness can have dire implications far beyond the person who is sick.
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and that, well, is on the rest of us.
lisa machado is the executive producer of healthing’s advocacy & better health. she can be reached at lmachado@postmedia.com.
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