Jonathan Garfinkel’s latest book is In a Land Without Dogs the Cats Learn to Bark. When is it enough? This question has often run through my head. Maybe it’s the question everyone living with chronic illness asks themselves at certain times. Which is to say, “What is a good life? What is a life worth living?”
For 40 years I’ve lived with Type 1 diabetes. There have been good years and bad years. Complications, some challenging, most manageable, built up over time. Then, four years ago I developed long COVID. Diabetes was plenty to manage. Long COVID’s neurological effects took living with disability to a whole other level. It was, at times, too much.
Ironically, I was trying to finish my PhD and a memoir about living with Type 1 diabetes. Instead, I was languishing in bed with fatigue and forgetfulness. Every day I asked myself: Was this going to be the rest of my life?
When I learned this past winter that Kiano Vafaeian, a 26-year-old man, was granted medical assistance in dying (MAID) due to Type 1 diabetes and complications including neuropathy and progressive blindness, augmented by a lifelong struggle with depression, it shook me. He had had enough.
In Canada, MAID comes from the admirable philosophy of dying with dignity, rooted in the concept of individual autonomy, balanced by protecting the vulnerable. The practice was legalized 10 years ago, in June 2016, for patients with terminal illness whose natural deaths were “reasonably foreseeable.” The parameters for what are known as Track 1 MAID were clear: a patient must have a serious and incurable condition, be in irreversible decline, and be suffering intolerably in ways that cannot be relieved on terms they find acceptable.
In 2021, after a challenge by two Quebec residents living with chronic disabilities, legislation was passed to allow MAID for people “whose deaths are not reasonably foreseeable” – known as Track 2 MAID. This was more controversial as it is harder to define. The current debates in parliament about whether people living with mental illness should also have access to MAID has only intensified the arguments. (Currently, mental illness alone does not qualify; in Mr. Vafaeian’s case, his depression was considered alongside his physical deterioration.)
It has been a decade, but questions remain: When does a person living with disability whose death is not imminent have the right to say “enough”? How do medical professionals determine if an individual’s autonomous choice of assisted death is humane, or a result of a system that has failed a patient who feels they don’t have any other options?
I did not know Mr. Vafaeian, but it is clear he suffered. As I watched him in an interview, I kept thinking: what if he’d had better alternatives? Could he have received better advice and therapies, more suited to his specific needs? What if there were other people with diabetes or blindness who were there for him to speak to, help shoulder his burden, share stories, advice and inspiration? Mr. Vafaeian – as he said – felt alone in his illness.
To me, this is one of the most common adversities of the chronic illness experience: the loneliness of it. Living with disability in an able-bodied world is incredibly challenging. Many people with disability are without any support network – no one to help with grocery shopping, take out the garbage, cook meals, bring them to medical appointments. For others, people may be around to help, but there can remain a sense of alienation resulting from living in an uncaring system.
I imagine Mr. Vafaeian felt alone facing vision loss. There are so many small objects to navigate with diabetes: tiny needles, fragile insulin cartridges, the coin-sized continuous glucose monitor’s retractable needle punched into an arm every 10 days. Then there are the blood glucose levels to monitor and respond to by adjusting insulin dosage and carbohydrate calculation, a precarious balancing act requiring dozens of calculations and measurements daily. How would he do the things he needed to live?
While I might look healthy, there are days in a week I simply cannot get out of bed. Plans are cancelled, jobs passed up. Anxiety blossoms. This is often accompanied by shame and humiliation – I wonder if Mr. Vafaeian felt it too. The shame of inconsistency. The humiliation of not being able “to do” and feel your life is worth living. We all have a desire for a life with dignity, autonomy, belonging and meaning. To feel we matter – to others and ourselves. These are hard enough to achieve when you’re healthy. But when living with disability, it can feel impossible.
In part it’s a question of accommodation, both physical and psychological – our health care systems do not have the support in place required to accommodate the specific, multi-faceted needs that often accompany people living with chronic illness. Earning money becomes an anxiety that predicates an uncertain future. How can I afford next month’s rent and groceries? How will I work with a body that constantly challenges the notion of consistency needed to be a productive person? How can I live independently and freely, while recognizing that I depend on others to live? Which is to ask: is it morally acceptable for a society to assist in the death for groups of people it is doing so little to help live?
Ethicist George C. Webster, whom I spoke to by phone, addressed MAID’s legislative focus on autonomy by reframing the question. “The health community is driven by an understanding of autonomy, which I think is a simplistic expression of who a person is. Choice doesn’t exist in a vacuum.” To Dr. Webster, even well-intentioned clinical assessments can work against patients when they fail to think critically about what autonomy actually requires – adequate options, genuine support, freedom from coercive circumstances. These are conditions often absent for people living under the wide umbrella of chronic illness.
And those people, it turns out, are far more numerous than we tend to acknowledge – and growing at alarming rates. Meghan O’Rourke’s 2022 book, The Invisible Kingdom, documents the increase in autoimmune illnesses that have created what she calls “a silent epidemic.” In Canada, 300,000 people live with Type 1 diabetes; this number is growing 4.4 per cent per year (between 2000 and 2022 it increased 34 per cent). Around two million Canadians live with autoimmune illnesses, including multiple sclerosis, inflammatory bowel disease and rheumatoid arthritis. A landmark U.K. study in the Lancet in 2023 states that in the last two decades there have been increases in autoimmune illness upwards of 22 per cent, largely driven by individuals who had pre-existing autoimmune diseases developing a secondary one.
Post-viral acute illnesses, like long COVID, fibromyalgia, Lyme disease and myalgic encephalomyelitis/chronic fatigue syndrome are also on the rise. In Canada, over two million people live with enduring symptoms of long COVID, while over 600,000 live with diagnosed ME/CFS and 800,000 live with fibromyalgia, numbers experts warn are surging due to post-viral complications. These categories are distinct but overlapping. Autoimmune illnesses vary widely – some are well understood and treatable, others remain elusive. Post-viral acute conditions like long COVID and ME/CFS occupy a greyer zone: poorly understood, difficult to diagnose, and largely invisible to a medical system designed around acute care and biological markers. What unites all of them is that patients often navigate a fragmented system ill-equipped for the complexity of chronic, multi-system illness.
As someone writing about and living with Type 1 diabetes and long COVID, my focus is less on the biological research of these diseases and more on how patients are treated by the health care system and society. The “invisible kingdom” that Ms. O’Rourke describes is, in my long COVID experience, a world of medical gaslighting, lengthy delays in diagnosis and a lack of co-ordinated care. My 15-minute diabetes appointments, once every six months, barely scratch the surface of trying to address the daily demands and complexities that comprise a life with chronic illness, and the anxiety and burnout that so often overwhelms me.
I have often fantasized about my various specialists gathering together to co-ordinate a complex and multi-faceted approach to long COVID and diabetes, not as separate diseases but as one continuous illness experience. While this sounds like a pipe dream in a world of specialization and eroding health care systems, there are places of innovation where this is happening. Centres for post-viral acute illnesses, like the Cohen Centre for Recovery from Complex Chronic Illness in New York, and the UHN Post-Covid condition rehabilitation program in Toronto, offer a diverse group of co-ordinated health care professionals. These institutions are rare beacons of light in a dark and outdated approach to health care.
There is a significant amount of time and energy a person living with disability has to invest just to stay alive; living with diabetes is a part-time job. But it also goes to our very being. It’s essential to have income support and a place to live. It’s also important to have a sense of belonging, to feel our lives count and are meaningful. A person living with disability has to titrate time spent on health and health care, while trying to live as full a life as possible. It’s exhausting.
To say “enough,” as Mr. Vafaeian did, is the cry of someone who felt defeated by an uncaring system – exhausted by it.
I recently spoke to Dr. Ed Weiss, a physician in Toronto and one of Canada’s first MAID practitioners in 2016. Although he’s worked on several Track 2 cases – meaning when natural death is not foreseeable – he’s concerned the wording in the legislation is too broad. “What is ‘irreversible decline in capability’? What are considered ‘unacceptable conditions’ for physical and psychological suffering? I think the criteria put in place to evaluate eligibility for Track 2, and the oversight needed to make sure that’s being done ethically, is where we’re falling short,” he told me.
In the case of Mr. Vafaeian, this ambiguous terminology likely contributed to the approval of his second MAID request in December 2025. (The first time he sought MAID, in 2022, his mother initiated a petition to stop an Ontario doctor from granting Mr. Vafaeian’s request. He eventually found a doctor in B.C. to grant him MAID.) For Dr. Weiss, though, it is more than a problem of legislation. He cites a philosophical divide within the medical profession itself.
“On the one hand, you have the ‘maximalists’ who believe in ‘autonomy über alles.’ Some doctors see that as the priority and their focus in medicine.” Dr. Weiss describes other doctors who think autonomy shouldn’t be the primary concern in health care – the difference between “providing care” and “caring for patients.” Someone who provides care helps to facilitate autonomy at all costs. Someone who cares for patients tries to look at the bigger picture of a patient’s suffering and see illness in its entirety. While Dr. Weiss acknowledges the latter might be judged by some as paternalistic, he believes it is a doctor’s duty to look out for the patient and navigate their illness in all its complexities and manifestations, including aspects the patient doesn’t always see.
Dr. Weiss fears Canada’s autonomy-first approach leans too much on patient demand, as well as MAID provider autonomy, leaving it up to each individual health care provider to determine if they have sufficient expertise for Track 2 cases; this allowed Mr. Vafaeian to “shop around” until he found a doctor to assent to his request. By contrast, the Netherlands focuses more heavily on medical consensus. As a result, approximately 90 per cent of Dutch assisted dying requests for solely mental illness are turned down after rigorous physician assessment.
“One thing missing in medical schools is the way doctors are taught to listen to people’s stories,” said Dr. Weiss. He explained that doctors need to learn to listen better and more closely, which also means not taking everything a patient says at face value. “Integrate it with the person’s context. Think about what’s not being said. What are the broader patterns in a person’s life? If a person has a lifelong pattern of self-neglect, of not being able to assert themselves, that speaks to something more than the suffering of the current moment.”
Dr. Weiss’ desire to see more health care professionals engaged in critical listening echoes the work of Dr. Rita Charon, author and founder of the School of Narrative Medicine at Columbia University. Dr. Charon advocates close-listening to patients’ “stories of suffering” and treat a person’s illness narrative the way a literature scholar might investigate a Chekhov short story: look for inconsistencies, find connections, note the unsaid. Of course, in a 15-minute medical appointment – if one is fortunate to even get such an appointment – there is only so much time for listening. But a world where doctors are taught and encouraged to be better communicators and more curious listeners in their patient engagement is possible. The chronically ill – often experts in their illness from lived experience – might even teach health care professionals things they did not know.
Dr. Weiss doesn’t believe MAID maximalists are ill-intentioned, nor, as some disability advocates argue, in the business of trying to get rid of the disabled. The maximalists see MAID as an end to someone’s suffering. It should also be noted that in Canada only 4.4 per cent of MAID cases are Track 2. Most people with chronic illnesses try to find better ways to live.
What is clear from my conversation with Dr. Weiss – and the story of Kiano Vafaeian – is health care providers need to do better at accommodating the chronically ill. Listening is important. That said, you can have the most empathic health care team and still struggle with loneliness and shame. The question is how do we, as a society, create spaces for belonging, both public and private, so those with chronic illness can live in more meaningful ways?
Interestingly, Dr. Weiss no longer practices MAID. Instead, two years ago he turned his attention to grey zone illnesses, specifically fibromyalgia. While supportive of MAID, he increasingly finds he wants to focus more on ways to help people live better lives, not end them.
While I was learning to live with long COVID – it became apparent I would never fully recover – it was suggested by a doctor that I keep a daily numerical grade for my symptoms. At first, I was resistant; I didn’t want to devote extra energy to an illness that already demanded so much from me. But over time, I found the exercise became meaningful in ways I hadn’t imagined. The numbers created a qualitative database from which I could see the rise and fall of things, good weeks and bad weeks, over the span of two years. Sometimes the recovery from the bad spells were shorter than those before. This gave me hope. Not to find a cure to my illness, but to learn to live with it better.
Our health care systems necessitate such small gestures of patient advocacy. The numbers also reinforced what I believe an essential tool in managing chronic illness: patience. The ups and downs of disability often follow a rhythm that resists easy accounting, frustratingly unpredictable. To follow these patterns has been illuminating and empowering. I can share these numbers with other people online in the long COVID community, or bring them to a doctor’s appointment. They are a qualitative representation that is invaluable in the short medical appointments which we, the chronically ill, lug our tired bodies to.
Yet even patience puts the burden on the patient to navigate a deficient system. Disability rights scholar Catherine Frazee, who responded to my questions by e-mail, gently reframed this for me. Rather than advocating patience as a personal virtue, she introduced what disability scholars call “crip time” – a concept that names, in her words, “our collective refusal to be measured against the relentless tempo of an ableist world. Crip time is not merely the accommodation of needing a little longer; it is a political claim, a challenge to the fiction that human worth is calibrated by speed, productivity, and the seamless continuity of function.” Ms. Frazee sees Track 2 as reflecting something troubling about our culture’s relationship with time. “One of its most seductive features – and I choose that word deliberately,” she wrote, “is that it offers what no other response to suffering can: immediacy and certainty.” Every other path – whether medical, social, or communal – is slow, uncertain, and asks a great deal of everyone involved. The asymmetry, she argues, is stark. Track 2, she wrote, “emerges from and reflects a culture that has very little tolerance for the long, unresolved, non-linear experience of living with disability or chronic illness. The temporal structure of MAID – swift, decisive, final – mirrors the culture’s impatience with us, dressed up as compassion.”
The concept of crip time unsettles me. It asks something difficult – to refuse the terms of a world that measures worth by productivity and continuity. I have spent 40 years trying to prove I could meet those terms. But Ms. Frazee’s deeper challenge is not about personal acceptance. It is structural: why has our society organized itself around neglect of the chronically ill rather than their dignified accommodation?
I wish Mr. Vafaeian had found his way to that accommodation. He was determined to die, and yet in the interview, he repeatedly talked about wanting to be convinced to keep living. Maybe his story upsets me because he negotiated the question so many of us are uncomfortable asking. Is my life worth living? Is medical-assisted dying more dignified than living a compromised life with a disabled body in an able-bodied world?
