When we judge the poor the way we judge the chronically ill

by Carolyn Thomas  ♥  @HeartSisters

There’s an old joke about a woman who is successfully losing weight by following a very strict diet. But one day, her hubby returns home to find her sitting at the kitchen table finishing off a Hershey chocolate bar. He says to her: “Honey! You’ve been doing so great on your diet until now! How could you eat that chocolate bar?”

And her reply:

“You don’t know how many I wanted . . .”

That response sums up a profound message that goes beyond mere diet-cheating to how swiftly we rush to judgement based simply on what we see.  Mostly, we rush to judge other adults based on actions or behaviours that are none of our business (sometimes criticism is thinly veiled as “caring”:  I care about you so I have to mention the chocolate bar I see you eating. . . )  We judge others because they are not like us, because they make choices we wouldn’t, or because they make choices we might secretly want to make, too – but stop ourselves from doing.

Dr. Lisa Wade’s provocative essay on how we judge those living in poverty recently reminded me of how those living with a chronic illness diagnosis like heart disease can feel similarly judged. 

Dr. Wade suggests in her Sociological Images essay that those who make judgements about poverty often reveal a blissful ignorance about what it’s actually like to be poor:

“Some people can’t seem to understand why poor people can’t just stop being poor.

“One of the things that gets harped on is the idea that poor people spend money on frivolous things; somehow some people believe that, if the poor just gave up their cell phone and Nikes, they would pop up into the middle class.”

Similarly, we often see the same judgmental tone from those lucky enough to live with what’s called healthy privilege, a phenomenon observed in those who simply have no clue what it’s like to be chronically ill because they’ve never been there.  If only all those sick people out there would just start exercising or meditating or eating vegan, they could be healthy again. . .

As psychologist Dr. Ann Becker-Schutte describes healthy privilege:

“Healthy people enjoy the privilege of bodies that work in the ways that they expect, free from regular pain or suffering, without extraordinary effort. 

“Healthy privilege allows healthy people to assume that their own experience is ‘normal’, and to be unaware that coping strategies that work for them will not work for someone dealing with serious illness.”

Here’s a small example: I’ve written previously here about overhearing two workplace friends chatting about another of our colleagues who was off work on extended medical leave. One said to the other:

“Oh, I saw ____ the other day. She was out riding her BICYCLE!” 

The way she said that word ‘bicycle’ stuck with me, tossed off with that pared down judgmental tone we use when what we may really want to spit out is: “Hmph… Must be nice!”  The tone somehow implied that anybody who can hop on a bike and toodle around the neighbourhood on a sunny day cannot be THAT sick after all.

It also reveals a blissful ignorance about what it’s actually like to be ill.  Climbing onto that bicycle for a short ride around the block in the fresh air may in fact have been the one and only activity our colleague was even remotely capable of doing that day.

Nor do most of us have a clue about what it’s like to be living in true poverty.

As sociology professor Dr. Wade warns in her essay, Why You Should Shut Up When Poor People Buy New Nikes, 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, she explains.  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 nice restaurant, a little vacation, or other things that most of us just 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 the rest of their lives.

So when we see someone (we think is) poor walking down the street wearing a nice pair of Nikes, perhaps what we are seeing is someone who decided (whether out of a moment of weakness or not) to NOT deny themselves at least this one thing; perhaps we are seeing someone who is trying to hold on to some feeling of normalcy; perhaps what we are seeing is a perfectly normal person who just wants what they want for once.“

I’m thinking that trying desperately to hold on to “some feeling of normalcy” is likely universal among those living with chronic illness, too. I don’t know about you, but I really miss “normal” . . .  

And denial can be just as common among those who live with chronic illness.

First, of course, comes the knee jerk denial that’s inherent in receiving a life-altering diagnosis. Then the reality sinks in that this is really happening to us, and that life as we know it until now may be changed forever. We may not be denying ourselves good shoes or a newish mattress, but the very nature of a serious illness can feel like every waking moment is now spent focused on what we must do and – just as significantly – what we must stop doing from now on precisely because of our diagnosis.

And just as Dr. Wade writes, we also know that we might be focused on these things for the rest of our lives.

Dr. Victor Montori and his Mayo Clinic-based team refer to the relentless work of being a chronically ill patient as the “burden of treatment” – often beyond the capacity of the patient to cope.  In their innovative approach to health care that they call Minimally Disruptive Medicine, these physicians cite research that suggests a chronically ill patient may spend two full hours every day spent entirely on diagnosis-related health care activities.(1) 

For example, we relentlessly organize and count out medications we don’t want to take. We manage frequent medical appointments we wish we didn’t need to keep. We endure often debilitating daily symptoms and wonder if they’re bad enough today to call the doctor or not.  We plan, purchase and prepare specific kinds of allowable food and fantasize about treats that will no longer ever see the inside of our grocery carts again. We battle bone-crushing fatigue or pain or shortness of breath while trying to paste on happy faces so as not to bother those around us with our own distress. We measure and track and weigh with weary reluctance, not with the narcissistic self-absorption of the worried well.

We remember who we were before this diagnosis, and we grieve the loss of what we can no longer do or become.

Texas patient advocate and health policy attorney Erin Gilmer blogs at Health As A Human Right.  She now knows firsthand what it’s like to be living with the ongoing deprivation of poverty brought on by a number of serious medical conditions. She explains:

“I see both sides, really.  I come from the privilege of being an educated white woman, and from a background and culture where it was okay to question and fight for what I want.  I knew the correct jargon, and after so much time in hospitals have enough knowledge on what to ask for and fight for. 

“I have the privilege of having my nice ‘white girl’ clothes that disguise me as having money from my former career days.  I have the privilege most of the time of people who don’t ‘see’ my disabilities (although when they find out, that privilege is lost).”

Erin also offers a stern dose of reality for Silicon Valley tech types who believe – arguably because of their own sense of healthy privilege – that all those health tracking apps they’re busy designing, developing and rustling up venture capital funding for are somehow going to change health care forever:

“I am frustrated by these prescriptions and ‘solutions’ offered.  I don’t need an app to tell me how to track my fitness goals. And digital medication reminders are not what I need when I’m poor and can’t afford medications.”

People diagnosed later in adulthood with a chronic illness diagnosis – no matter the diagnosis – may often feel, as I wrote here, like reluctant citizens of a new country, forcibly deported to a place none of us ever wanted to visit.  All we dream of most days is just being able to be “normal” once again, as futile as we may realize that dream to be.  See also: “To Just Be A Person, and Not A Patient Anymore”.

And on a rare occasion when we want to “hold on to some feeling of normalcy” – like enjoying a real bacon, tomato and lettuce sandwich as I described here – we feel a bit like the woman with her chocolate bar in my opening joke, caught red-handed, embarrassed, defensive – and knowing full well that it’s now open season on high-minded criticism from others.

Full and open disclosure:  I’ve spent more than my fair share of adult life practicing being pretty darned judgmental myself.  (Remember my smug story of watching the woman in the Minneapolis airport pouring Coca-Cola into her infant’s bottle?  Meeeeee-ow!) 

But I am trying to substitute more healing thoughts and less snark – surely an anti-inflammatory response for all heart patients.

So the next time you see a person you judge to be too poor to afford those nice new shoes, or a person out biking while she’s off work on medical leave, or a heart patient eating bacon  – or an overweight person enjoying that Hershey bar! –  try just for a moment to heal that negative judgement before it has room to fester and grow.

Until you walk a mile in their shoes (or in their hospital booties), you simply do not know.

(1)  Jowsey et al. Time spent on health related activities associated with chronic illness: a scoping literature review. BMC Public Health 2012, 12:1044

Q: Why is it so irresistible to make snap judgements about others?

See also:

• “Us” vs “them”: the under-served patient speaks up – Erin Gilmer’s orginal essay
• “We are all patients.” No, you’re not.
• Looking good for your doctor’s appointment: oui ou non?
• When we don’t look as sick as we feel
• “To just be a person, and not a patient anymore”
• Healthy Privilege – when you just can’t imagine being sick

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