I am one of the exceptionally fortunate ones. I adore my work. As a journalist, I geek out over investigative reporting, the future of the news industry, and storytelling techniques. But I often wish I didn't have to work.
Five years ago, my life changed. One 2021 morning, I awoke zapped of energy. As the days wore on, my symptoms multiplied: brain fog, unabating leg pain, lightheadedness, heart palpitations, crushing fatigue. It took months to get diagnosed with long COVID, an illness for which neither treatment nor cure exists. At the time, I was on a pandemic-extended parenting leave (unpaid, thanks to being self-employed), but 15 months in, I decided to return to work part-time for my mental health. Work was a welcome distraction from the fear about being so sick, and feeling confident in my professional capabilities at least slightly counterbalanced my sense that my body and life were breaking irreparably.
Ever since, I’ve worked when I maybe – or definitely – shouldn’t have. The first couple of weekends after returning to work, I was so achingly exhausted that I spent both days crying off and on in bed. And I’ve had similar days, weeks, and months ever since, summoning all my scarce energy to interview sources (taxing my cognitive disabilities), conduct video calls with colleagues and editors (in which I try to look less ill), and research and write articles. After all, as a middle-aged woman, these ought to be my peak years of earning potential.
The first couple of weekends after returning to work, I was so achingly exhausted that I spent both days crying off and on in bed.
The flaw in this equation is that I often spend energy I don’t actually possess, pushing beyond my reserves into severe flares which land me in bed for days. Even when I don’t end up in a full flare, work consumes all my functional hours and energy, leaving nothing for my family, much less myself.
Yet my rationale is one that disabled and chronically ill people know all too well: I work to save money for my future care.
Working through chronic illness to save for future care means spending energy you don't have to earn money that won't be enough.
Srattha Nualsate/Pexels
In her book, Year of the Tiger: An Activist’s Life, the late Alice Wong, a disabled MacArthur fellow, envisioned an antidote to stress around care: a future infrastructure “that treats care as a normal part of the human lifespan and not a failure or weakness.”
For me, care is anything but abstract. My partner is my sole caregiver, and I depend on him for cooking, cleaning, help bathing, laundry, childcare, and so much more.
While our new roles as care recipient and caregiver could have been a shock – especially given that I was barely past 40 when I became sick with long COVID – I’d had family models of care. Growing up, my grandmother lived with us and often told me stories of her mother caring for her amputee grandfather and developmentally disabled aunt, without any hint of obligation or burden. As my grandmother aged, my mother – her daughter-in-law – cared for her, and I helped out around my studies and work.
Eventually, my grandmother moved into what would be a series of private assisted-living homes in the United States, where Medicare helped fund part of her care. While my grandmother’s care providers seemed largely attentive, I was unsettled by the commodification of her life – both her housing and care – and by witnessing her surrounded by strangers. Ever since, I’ve known I want to age in my own home.
Although I’d always had other undiagnosed disabilities, it was long COVID and subsequently becoming a wheelchair user that made me embrace a disabled identity. As I absorbed disabled history, I discovered my grandmother’s history of family care was an anomaly: in North America, disabled people were kept in institutions, away from public scrutiny, until the past few decades.
Learning this made me even more determined never to live in assisted living, long-term care, or any type of congregate care facility. I want autonomy over my care, always. This will cost me.
In Toronto, the median wage for a personal support worker providing home-based care is $21 an hour – but that rate will rise with inflation. Also, the fact that personal support workers usually work only part-time for each client means that paying more is not only the ethically correct thing to do, but a way to ensure that you can actually get a support worker to commit to your care. Were I not to have my partner to care for me, even at today’s median rate, only three hours a day of PSW care would cost me $22,914 annually. But because I can only work a few hours a week, if at all, I don’t even earn that much in a year.
Ideally, given my disabilities and chronic illnesses, my partner and I would like to save a minimum of $1 million – a figure we’ve seen in personal finance media and surveys about Canadian retirement planning. While we’re building equity in our home and my partner has some retirement savings, we are nowhere near that target.
When chronic illness limits how much you can work, saving for future care becomes mathematically impossible.
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Long COVID, which develops in at least one in five COVID-19 infections and affects an estimated 400 million people worldwide, also altered my financial outlook.
While I once traveled widely for work and pleasure, and enjoyed eating out, now I am immunocompromised and too ill to leave home. Even if I could fly or go to a restaurant, the risks of germs – and my wheelchair being broken by an airline – render this impossible. And in a continuation of intergenerational care in our two families, we also financially support my partner’s mother abroad.
As an immigrant parent, I adamantly do not want my own child to shoulder my care costs in adulthood. Not because there is anything wrong with wanting to do so, but because I already fear for their financial future in Canada (especially if they stay in their hometown of Toronto, where the average house currently costs over $1 million).
My partner’s income makes me ineligible for Ontario Disability Support Program financial benefits, which are only for disabled people earning less than $2,600 per month without family financial support. Even if I qualified, ODSP only pays around $1,408 monthly, or $16,896 a year. (I am a fortunate outlier; 16% of disabled people in Canada live in poverty, according to the organization Disability Without Poverty.) But being self-employed, my limited savings will be my only pension. And like so many other women, I suffer additional financial penalties for simply being a woman and a mother, and taking time off to raise my child.
The body you're breaking to earn money is the same body you'll need money to care for.
Coppertist Wu/Pexels
Disability Justice, an intersectional movement pushing for our full inclusion in society, has a tenet that I believe in passionately: “People have inherent worth outside of … capitalist notions of productivity.” In other words, we are all enough, regardless of whether we can earn money and be “productive” or not.
And yet worries about my future care costs end up pushing me towards harmful productivity.
Since developing long COVID, I have been determined to work as much as possible, while hoping that work itself doesn’t make me sicker – or cause me to die earlier.
The past six months, I’ve been in a severe flare, largely unable to work. Initially, I anticipated bouncing back. Now I’ve accepted that the only certainty with long COVID is its unpredictability. I have slowed down, away from screens and emails and obligations, sleeping as much as my body needs. I can now see that, for so very long, I was running on fumes. What I thought was entrepreneurship and creativity was actually more akin to desperation and fear of being unable to work.
As I hibernate through this flare, and contemplate when I might be able to work again, I try hard not to worry. And I wonder: Is it worth risking my health to work to pay for my future care?
