I learned a terrific new word recently. The word is precarity, meaning the state of being precarious, unpredictable or uncertain. Any woman who is freshly diagnosed with heart disease already knows the precarity of life following a cardiac event – a reality that suddenly feels precarious, unpredictable and uncertain as we try to make sense of something that makes no sense. And after 19 months of navigating a global pandemic, we now know yet another kind of precarity. . .
Precarity is a word sometimes used by social scientists to describe being under-employed. A study published last year in the journal Social Science & Medicine looked at what are called material-need insecurities that involve our basic resources like income, food, housing or health care that are threatened by poverty.(1) Researchers have long suspected that material-need insecurities may also be important predictors of poor health outcomes, and in fact they did find that these insecurities are not only stigmatizing but “widely detrimental to health.”
For example, a heart patient can receive the best possible treatment from the best doctors in the best hospital, but if that patient returns home to unsafe housing, or can’t afford to buy the expensive new medications those doctors have prescribed, or lacks family or community support during a complicated recuperation, how successful will her recovery actually be? Yet few if any clinicians know much at all about their patients’ home life before sending them back there.
At no time leading up to my own hospital discharge, for example, did any doctor or any nurse working in the CCU (the intensive care unit for cardiac patients) ask me about:
- my home life (was there anybody at home to help me while recuperating? anybody at home who needed me to take care of them?)
- my workplace (where did I work? how much time off could I take? would I be returning to a demanding job?)
- my support circle (did I have family members, neighbours or friends to look in on me, help me out, be there in case of need?)
- my finances (would I be able to afford to get those prescriptions filled for the expensive cardiac medications I had just been ordered to take for the rest of my natural life? could I afford to take any unpaid time off work if needed?)
The late patient advocate/health policy attorney Erin Gilmer knew firsthand what it’s like to live in precarity. I first met Erin at Stanford University when we were both offered ePatient scholarships to attend the first Medicine X conference in 2012. She felt as frustrated as I did meeting so many Silicon Valley hipsters there, all busy hustling venture capital funding for their tech start-ups that (as they assured us) were going to magically change health care forever (while making themselves very rich) – to which Erin bluntly responded:
“Your digital pillbox reminders are not what I need when I’m poor and can’t afford medications.”
There’s another factor that people like Erin and others living with both chronic illness and poverty face in this kind of precarity: being female.
A study published this year in Systematic Reviews suggests that women lead the list of worker categories who are significantly most likely to experience higher levels of precarious employment, which, in turn, can increase their risk of related health problems.(2) Besides women, these groups also include youth, racialized, ethnic/minority subgroups, foreign-born, lower-educated, disabled or informal workers.
When Boston researchers studied food insecurity among patients diagnosed with diabetes, they found that patients who reported local food insecurity (limited or uncertain availability of healthy food choices) were also significantly more likely than food-secure patients to have under-used medication prescriptions due to the high cost of meds, poor diabetes control, and increased outpatient clinic visits.(3)
All of this may seem foreign to those with little or no experience of living with material-need insecurities.
Dr. Lisa Wade’s provocative Sociological Images essay on how we tend to judge poor people suggests that those who make judgements about poverty often reveal a blissful ignorance about what it’s actually like to live in this kind of precarity:
“Some people can’t seem to understand why poor people can’t just stop being poor. What most of us do not get is the extent to which being poor is living a life of self-denial.
To live in poverty is to constantly deny oneself all the “normal” trappings of adult life, Dr. Wade added. These can include having your own apartment or a car, a newish mattress, good shoes that aren’t worn out, and small pleasures like eating dinner in a restaurant, a little vacation, or other things that most of us may simply take for granted. Dr. Wade adds:
“They have to actively deny themselves these things every day. And, since most poor people remain poor their whole lives, they must be prepared to deny themselves (and the members of their families) these things for a long time.”
If you’re unlucky enough to be poor and sick at the same time (or like Erin Gilmer, poor because you became sick), the “burden of treatment“ can feel insurmountable. This common phenomenon in chronic illness is brilliantly described by Dr. Victor Montori and his Mayo Clinic-based team when they refer to the relentless work of being a chronically ill patient – the kind of work that can often be simply beyond a person’s capacity to cope. Dr. Montori, by the way, seeks to improve what he calls “industrialized health care”; please read his wonderful little book, “Why We Revolt: A Patient Revolution For Careful and Kind Care” to learn more.
I was reminded of Dr. Montori’s innovative work when one of my readers told me a few years ago that, while recovering from her heart attack, she not only couldn’t afford the insurance co-pay for the cardiac rehabilitation classes her cardiologist had prescribed, but the facility was open only during business hours (most programs are run for the convenience of staff, not for heart patients, so very few programs offer flexible evening or weekend classes).
She couldn’t afford to take unpaid time off from her part-time day job to attend. Yet even if she could, there was no childcare provided by the rehab facility, and she couldn’t afford to hire a babysitter 2-3 times a week, every week for two months. Like many other women, she became a cardiac rehab drop-out – but not because she didn’t genuinely want to attend this important rehab program, but because she couldn’t afford the cost, had young children, and couldn’t attend during the daytime hours the classes were offered.
It almost makes you wonder who these cardiac rehab classes are actually designed for? <cough> old-retired-white-guys <cough>
Precarity basically happens when we feel powerless, overwhelmed and no longer “in charge” – whether it’s living in poverty, or surviving a cardiac diagnosis, or navigating through months of a global pandemic.
Image: Geralt, Pixabay
Whittle, H. et al, “Precarity and Health: Theorizing the intersection of multiple material-need insecurities, stigma, and illness among women in the United States”. Social Science & Medicine, Volume 245, January 2020, 112683. https://doi.org/10.1016/j.socscimed.2019.112683
Gunn, V., et al. “Initiatives addressing precarious employment and its effects on workers’ health and well-being: a protocol for a systematic review.” Systemic Reviews 10, 195 (2021). https://doi.org/10.1186/s13643-021-01728-z
Berkowitz SA et al, “Material Need Insecurities, Control of Diabetes Mellitus, and Use of Health Care Resources: Results of the Measuring Economic Insecurity in Diabetes Study. JAMA Internal Medicine. 2015;175(2):257–265. doi:10.1001/jamainternmed.2014.6888
Q: What has your experience with precarity felt like?
NOTE FROM CAROLYN: I wrote much more about how life can feel “precarious, unpredictable or uncertain” after a cardiac diagnosis in my book, “A Woman’s Guide to Living with Heart Disease” . You can ask for it at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from Johns Hopkins University Press (where you can save 30% off the list price by using the code HTWN).