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Words Matter! Sensitivity Not Stigma in Diagnostic Description

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Do you ever feel you are screaming to the winds, and no one hears you? Or if they do, they choose to scoff, ignore your comments, or both?

I think many will say, "Yes," and I stand with you. Of course, sometimes the wisest among us will only scream internally and perhaps pray hard, but keep our mouths shut tight, when, for example, a relative or good friend falls hard, is blinded by what is seen as love, and becomes engaged to one you believe with all your heart will bring only misery. Yet, surely some of our observations about election antics that are actually only just beginning (we have nine more months), as well as how the media is covering many such "events," have brought shrieks -- that change nothing.

However, as frustrating as they are, I am going not going to concentrate on the above examples. Instead, I am going to focus on certain medical descriptions and the dangers that condescension (usually unintended) brings. My screaming to the winds in this area began following graduate school -- in the first job that placed me in a psychiatric setting. I worked with the families of those hospitalized, while staff psychiatrists and residents worked with the patients.

I could not believe the first time a staff psychiatrist telephoned me, requesting (more accurately commanding) "immediate details" about "the wife of the depressive who just arrived on my floor." (I admit that my mind responded: "It is not only your floor. Others are there also." But I bit my tongue.") Here is a conversational replay:

"Do you mean Mr. Herman (not the real name, of course)?"
"Yep. That's the depressive."
"Our patient has a name."
"Are you admonishing me, young lady?"
"I am suggesting that our patient has a name and that words matter."
"I will not waste precious time with your insolence."
Then a loud click (his, not mine).

This exchange led to a report to my supervisor that I had been "completely out of line." I was then "warned" by the head of my department in a cold, angry tone: "You are not going to change the culture here; just do your job." As you can well imagine, my job did not last long. I was fired for "the last straw" (according to my boss). This straw was to go to the office of the medical director to report a resident who was violently shaking a screaming, terrified patient who did not respond to questions.

Fast forward many years: My first grandchild, approaching her 7th birthday, was diagnosed with Type 1 diabetes (often referred to as juvenile diabetes), a devastating auto-immune illness where the pancreas, for reasons not understood, stops producing insulin. Much to my horror, many doctors and members of the public referred then and continue to refer to those like my beautiful, multi-talented and versatile granddaughter as "a diabetic," rather than a child who, along with many other brave and wonderful characteristics, has diabetes. I make the necessary correction whenever I hear this thoroughly inaccurate insensitivity, and not long ago, I learned that I had important, evidence-based support. Please read on...

A recent study published in the Journal of Counseling and Development focuses on the importance of the use of "person-centered language" (which highlights the person -- his or her humanity -- rather than the illness) to reduce stigma and change the way people view mental health issues. (Diabetes, of course, is not a mental health illness; however, this study shows the link between insensitively labeling and community acceptance of a whole person.) In other words, a human being should not be referred to as a "depressive," but as a person with depression. In like manner, a child or adult with diabetes is not "a diabetic," but one with diabetes.

Many professionals have long advocated for these sensitive, non-stigmatizing "person-centered" language adjustments that lead to community tolerance and acceptance, as well as personal self-esteem. However, there has been little previous research to support the link between language choices and perceptions of others. To test this thesis, researchers Darcy Haag Granello, a professor of educational studies at Ohio State University, and her graduate student, Todd Gibbs, recruited three groups of participants -- 211 adults from their community, 221 graduate students, and 269 counselors and counselors-in-training. Each participant completed the Community Attitudes Toward the Mentally Ill (CAMI) questionnaire. The same questionnaire was given to each participant, but half was given stigmatizing language, while the other half was given person-centered language.

The questions were designed to measure attitudes involving less-restrictive (isolating) treatment, more integration, community treatment (rather than institutionalization), and benevolence. Students, counselors and those in training showed higher degrees of authoritarian and socially restricted attitudes when presented with non-patient centered language. Those who were not students showed less benevolence toward those with a mental health diagnoses when exposed to non-person-centered language, as well as support of restrictive treatment and less integration.

With this in mind, I would like to advocate for one more change. Several years ago I was asked to offer a workshop for those with a family member who died due to suicide. One of the members spoke about the phrase commonly used to describe this horrific loss, "commit suicide." The whole group responded in agreement to her explanation: "It is beyond devastating to lose a loved one to suicide, and to have this loss described as 'committing suicide' sounds as if a loved one has committed a crime. This is not the case. Life just became too much to bear." I asked the group members their preference to describe their loss, and to a person, each preferred it said that their loved one "suicided." From that day to this, I have followed this lead. For yes, words matter.

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If you -- or someone you know -- need help, please call 1-800-273-8255 for the National Suicide Prevention Lifeline. If you are outside of the U.S., please visit the International Association for Suicide Prevention for a database of international resources.