You Never Know Who You Are Talking To: Making Stigmatizing Assumptions About Health

I have lived a privileged life made rich by an education and resources that helped me flourish. These privileges separate me from the suffering people in Appalachia who I think and write about. But since my diagnosis, for the first time in my life, I have an immature, but nontrivial, inkling of how social stigma feels.
01/22/2016 10:22 am ET Updated Jan 22, 2017

You never know who you are talking to.

This idea has begun to catch fire in American popular culture, even though related pieces of hoary wisdom have been in circulation for years, i.e. "don't judge a book by its cover."

Say what you want about how millennials have ushered in an era of social regress, but, as a twenty-something looking around at her peers, I wonder, has it ever been less in vogue or more socially unacceptable to make damaging assumptions about someone else's personal identity?

Just look at how Americans have started to talk to one another or about one another. A little over a week ago, the American Dialect Society released singular "they," the gender-neutral pronoun, as the 2015 Word of the Year. Last year the Society selected "#blacklivesmatter. Both of these words signify popular resistance against those who cannot compassionately imagine the stakes of personal identity. Singular they and #blacklivesmatter both challenge us to reconsider complex experiences related to identity. These words fight back against everyday forms of violence committed whenever someone makes assumptions or value judgments about another person based on how they present socially.

It is a relief that people are talking about gender and race differently and critically in the U.S. today. However, I want to contribute to the momentum of this movement - this anti-assumption movement - by sharing a personal story that hopefully expands the conversation.

This past year I was diagnosed with a common, but currently incurable, medical condition. This condition is not life or limb threatening, and an inexpensive therapy makes its undemanding management affordable with health insurance. Ninety-nine point nine percent of days, I do not even notice it. I am lucky.

However, common misunderstandings of this condition leave people who have it burdened by the management of a unique symptom: stigma.

As a young anthropologist of health and ethics, I spend a lot of time considering why and how some people suffer when others flourish. What are the social sources of disparate experiences? How do unexamined assumptions about one group of people contribute to the maintenance of entrenched social hierarchies? In particular, how do assumptions related to health status contribute to those hierarchies and inequities?

As a researcher, I have asked these questions in the specific context of low-income groups in Central Appalachia, specifically among communities suffering low access to medical care and poor health outcomes. Too many people elsewhere in the U.S. view resource-scarce Appalachian communities as Podunk, redneck, racist, fat, unhealthy, disabled, poor, illiterate, uninformed, isolated, detached--other. I have tried to complicate these stigmatizing stereotypes through my own scholarship.

As a white, middle-income American woman afforded many privileges in life, I self-consciously recognize that I scarcely know what social marginalization feels like (aside from navigating misogyny, but no need to proclaim all my adversity crosses in one blog post). Put simply, I had little sentient knowledge of what it meant to feel different, to feel less deserving of respect by virtue of my identity - until I was diagnosed with a stigmatizing, albeit minor, medical condition.

As I said, I have lived a privileged life made rich by an education and resources that helped me flourish. These privileges separate me from the suffering people in Appalachia who I think and write about. But since my diagnosis, for the first time in my life, I have an immature, but nontrivial, inkling of how social stigma feels. That has brought me one step closer to understanding what it means for some people to exist in the margins. I hope this will make me a more decent fellow human being over the course of life.

What do I mean by "stigma" related to health status? The best way I can describe stigma - a word too often used without clear definition - is through a recent personal anecdote.

A month or so ago, I went out with a group of friends for drinks after working all day. All of us were coincidentally in committed romantic partnerships at the time. We began talking at the bar about the kinds of challenges that couples might face together. Someone in the group mentioned obstacles related to health. Among those challenges included navigating chronic conditions with your partner.
Because my condition is a familiar one, it came up.

"That's a life-ruiner!" a presumably close - and drunk - friend said grimacing.

I sat silently with a broken, inscrutable smile still stuck on my face from the side chitchat I had been making with the bartender. I pretended not to hear her while all of this was going on - "there's no art to find the mind's construction in the face."

I am currently employed at a nonprofit bioethics think tank. What that means, professionally, is that I spend a lot of time working with scholars examining how things are and how things should be when it comes to health and medicine. This work has helped disabuse me of the shameful associations accompanying many incurable and stigmatizing conditions, especially when attached to the poor and people of color.

But I am human. I am not immune to the power of stigma and experience shame even when I know better than to punish myself for the same vulnerability to disease that all humans share.

Reflecting back on that evening at the bar, one thing stands out to me: my friend mistakenly assumed - arguably based on the social presentation of our young-professional group as almost entirely female, white, middle-income, straight, educated, etc. - that none of us could possibly have the condition that I do, in fact, have.

Her unintentional hurtfulness taught me how easily and unconsciously someone could operate on mistaken assumptions about what kinds of people get sick or infected. These assumptions reflect entrenched social hierarchies and maintain those hierarchies by casting some people as more vulnerable, contaminated, or, worst of all, deserving of a disease.

What does it say about me, that I said nothing to check my friend's lack of social awareness? This question has been on my mind since that night at the bar.

Should I have spoken up? I initially felt defeated by her blindness. How could she preclude the possibility that one of her many friends might suffer from the condition she was shaming? I would be wasting my breath trying to change the mind of someone so apparently unimaginative and socially insensitive, right?

I've settled on this answer: you never know who you are talking to. Sometimes - no, all the time - people surprise each other.