by Carolyn Thomas ♥ @HeartSisters
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
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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
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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
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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?
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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).
Heart Sisters 
Carolyn, I could write a book about this subject! Like Erin Gilmer, I am educated and have been able to successfully advocate for myself. But I have lived in precarity for most of my adult life, due to disability and chronic conditions.
People in precarity are blamed for it, you know, either because they are ignorant—which most are not—or in spite of the fact that like me they are educated, have “had every chance” and still can’t make a go of it. That said, I have become very good at self-advocacy and at building a healthcare team who will work with me, who trust and respect me, and who I can trust and respect.
These professionals see the person behind the condition, they know they can trust me to do the research necessary to understand my conditions or their recommendations or to ask the questions I need or listen when they think I need more. I write everything down. I listen. I am med “compliant,” which Medicare and extra help finally allow for. I know if I am ill, in ER or in the hospital (my primary care physician is a respected instructor in the hospital and residency program), I will have advocacy.
So where is the hitch? Because you knew, didn’t you, that there must be a hitch! If these particular people, these kind, professional people well-placed to give me the care, attention, time and advocacy I need, if these people are not available at any moment of need it all goes away. The team, in those moments, no longer exists, and I am left at the mercy of people who don’t know me, who don’t trust me, who don’t have the time or inclination to listen, who may be perfectly nice people but who have been trained into the medical industrial way of dispensing care.
This has happened to me for the past few weeks, and despite my attempts to explain, to reassure, to build a team of some rudimentary sort, to advocate for myself, all of this is meaningless. It is terrifying, frankly, and so familiar it’s as if my whole life has slipped back years and years. It’s frustrating, it feels hopeless, it could be life threatening, and it has been my greatest fear.
All I can do is move forward according to the very good care plan we originally had going and wait for my team to return. I am still at home. As I am aging, I have been thinking a lot about what I will do if this very scenario occurs in an emergency room, operating room, or some form of care setting or in my home. I realize after all my careful planning I still have no answers.
I still have no control over my own destiny, and I am likely not to be able to trust those who are sailing the ship.
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Oh Pat! That is my worst nightmare too! All it takes is the wrong timing, or the wrong place, and the unavailability of those we trust/who know us to undo the most carefully constructed arrangements and relationships. No wonder you are feeling frustrated and scared.
It should not be this way. Patients should not have to live in fear that, at any moment, we won’t get the care we need and deserve due to the fragile unpredictability of scheduling fate.
A couple of years ago, I was asked to do a presentation about my own cardiac care at our heart hospital as part of the media launch of a $3 million community fundraising campaign to buy new equipment for our cardiac cath lab. I was honoured to be invited to tell my story of the truly excellent care I received once I got upstairs to Cardiology. But I also frankly warned my audience that this $3 million spent upstairs in Cardiology will be meaningless to patients in mid-heart attack if they cannot get past the Emergency gatekeepers. And it’s frightening to think that successful navigation through Emerg will ultimately depend on who is on shift during that visit. It’s like a crap shoot!
Some patients with complex care needs actually get used to being dismissed by Emergency staff who don’t happen to be as educated on those complex needs as they should be – and in order to help themselves they come fully prepared – including with detailed letters from specialists. A prime example was an Australian woman who wrote to me about the appalling dismissal by Emergency staff of her coronary spasm symptoms – despite a letter she carries with her at all times written by a senior cardiologist (with significant experience in treating microvascular and coronary spasm disorders). This letter requests that Emergency personnel start an I.V. nitroglycerin infusion to treat future prolonged bouts of Ann’s intractable angina. Ignoring the letter, her last trip to Emergency resulted in staff refusing to do this infusion as directed by her cardiologist!
Talk about feeling helpless and not in control!
Please take care and stay safe – I hope your team members return very very soon…♥
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I hear you Pat, I too have cultivated a team of specialists that know me and trust me and I trust them. When I know my cardiologist is out of town … I hold my breath in precarity the entire time. I have even had my cardiologist tell another cardiologist to pay close attention because I know what I’m talking about.
Also my doctors actively work with me by phone & email to keep me out of the ER as much as possible.
My cardiologist is 62 and I’ll be lost if he retires before I leave the planet.
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Hi Jill – I suspect that many of us live in silent terror that our very wise docs will retire or move or (yikes!) die! Yet this reality will inevitably happen (we hope, as you say, this will not be until we leave the planet first…)
One of my readers Tommie O’Sullivan wrote about her own loss of a beloved doctor – what I believe to be a very common reaction: “Breaking Up Is Hard to Do”
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When I was nurse manager of a clinic for low income people, I once learned that a resident physician advised a homeless man newly diagnosed with diabetes to go to a bookstore and get a book to read on diabetes. I wonder if that physician still remembers my hallway lecture 20 years later. Sheesh.
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Bless your heart, Sara! There’s nothing like a hallway lecture from an indignant nurse to enhance real time medical education. I sure hope that resident took notes.
Classic tale of wealthy privilege – “…just take out your American Express card and drop into your favourite bookstore on your way to your golf game….”
Take care, stay safe. . . ♥
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Thank you for this very important post and reminders. I see this happen so often with so many living with metastatic breast cancer as I am. I am lucky and my husband and I planned well for a catastrophe, so I am not struggling as Erin and so many do.
But I see those who do and help as much as I can, but it’s a lot all the time for all of us.
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Hello Abigail – it seems odd to refer to any element of MBC as “lucky”, but you are so right: being financially okay because of prior planning means one less thing that you and your family need to worry about.
One of my readers told me recently that every month, she has to decide between getting her prescription filled or paying the water bill; some weeks she takes some of her daily meds every other day to help stretch them out. I suspect many are in the same boat, or worse.
Take care, stay safe out there . . . ♥
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You too. ❤️
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As much as I despise the drug commercials on TV…Several of my chronic conditions have defied treatment Except for some extremely expensive new medications: Repatha for hyperlipidemia and Ozempic for diabetes. Financially I was going to have to deny myself optimal treatment. Luckily ?? I have a small enough income I was given medical financial assistance by Kaiser, my HMO. So, for at least 1 year I have all my medications and CO-pays within Kaiser paid for.
I can reapply every year so should be okay. But it is precarious to have to rely on charity that may not be there the next time I need it.
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Hello Jill – ironic! one of the few times in life when you can be actually glad to have a ‘small enough income’ to qualify for financial assistance. I applied for drug company discounts the first year after my heart attack for one of my meds – good for one year, denied the following year (go figure… same drug, same diagnosis, etc. I hope you’ll have better luck re-applying next year.
The people I worry about are those who are not poor “enough”, yet not rich “enough” to somehow make it work!
Take care, stay safe . . . ♥
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Absolutely. This is the problem with not having national health insurance in USA. And Medicare for All is not the same, it costs $150.00 per month and only pays 80% of covered costs.
My son is on disability So he has Medicare extra help for his meds. But he lives in fear of losing his disabled status because he couldn’t afford the meds that keep him mentally stable.
So if he earns too much at his part time job he will lose his disability and Medicare help. It is a demeaning soul crunching situation. Does this still happen with National Health Insurance in Canada?
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Wow! $150 per month for Medicare For All sounds pretty steep, even unrealistic for many low-income families!?
Here in Canada, each of our 10 provinces and two Territories manage their own medical plans. Generally, hospital/medical care throughout Canada is funded by government plans. Where I live in British Columbia here on the west coast, we have a drug plan called BC Fair PharmaCare which helps all B.C. residents with a BC Care card (that’s essentially everybody) with the cost of eligible prescription drugs, some medical supplies, and pharmacy services through several drug plans. Because I’m retired from a workplace that shares the provincial government pension plan (funded by government and membership monthly premiums that depend on your years of workplace service plus the flexible menu selections you choose. 80% of the cost of my own meds for example are covered by my extended health benefit package, which also helps to cover menu options like physiotherapy, eye care/glasses, massage therapy, dental care, etc. About 75% of Canadians have some form of supplementary health insurance through employers or social service programs for seniors, minors, and those with disabilities. That’s a generous program, but still leaves many low-income working class Canadians at risk of falling through the cracks!
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