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People are not defined by their diseases

It’s easy to talk about people as if they were their diseases — “an alcoholic” or a “diabetic.” This is especially true in medical settings, where I often imagine that I have been guilty of reducing myself to what ails me: A fat lady. A post-menopausal woman. A depressed person.

But in our day-to-day lives and interactions with the health care system, such linguistic shortcuts and labels can do more harm than good. I witness this in my work as a health care journalist, in my life as a person with multiple chronic conditions, and as the mother of someone who died of a chronic illness that society stigmatizes.

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For example, I was nearly jarred out of my body at an NIH conference when I heard a panelist, a preeminent NIH-funded researcher, describe subjects of her pain studies as “junkies.”

“Junkies?”

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I reeled. I don’t think I’d heard that word since "Go Ask Alice" aired as a "Movie of the Week" in the 1970s.

For a moment, I thought I’d misheard. But again and again, the researcher said it: junkies. I looked around the room, wondering if it was just me who felt agitated. No one else seemed perturbed.

It was the summer after my son’s accidental overdose death, and hearing people who had suffered from addiction disorders described this way made my throat catch.

During the Q&A period that followed the presentation, I stood at a public-comment mic and raised my concerns about language, explaining that although my son had suffered from an addiction disorder, “addict” did not describe the whole of his short life — and the word “junkie” left me breathless and near tears. Junkie sounds so much like the useless debris we all accumulate in the clutter of our lives, and is not a word to describe a human life. By the time I was done explaining my concerns, apologies seemed to come from every professional in the crowd. The researcher apologized, stating that she was trying to stay within the time limit of her talk, and appreciated that she works with people — and in the future, would be more aware of the words she used.

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It is true that in the rooms of 12-step groups, people name themselves as addicts and alcoholics — not, I am told, to shame or label themselves, but to create a reality that every person in the room is struggling with the same disease. The words are not used to reclaim them (as “queer,” for instance, has been reclaimed by the LGBTQ community) but to become a part of what some describe as home.

In medicine and research, labels are applied like Band-aids, defining people as if diseases or syndromes were the entirety of their being. Which one of us would want to be named in this way? Or seen through such a narrow prism? It is likely that most of us want the people who take care of our bodies and minds to know that we have a life that goes beyond disease and we would prefer not to be permanently labeled.

Every day in medicine, clinicians have an opportunity to counter the misuse of language and to focus on the whole of each patient, and, in doing so, to push for awareness that no one life is as small as a disease that occupies some part of a body.

Janice Lynch Schuster (jlschuster827@gmail.com) is a writer and artist who lives in Riva, Md.

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