Words are such intriguing little creatures. One word can hold all kinds of meaning and connotation for one person and not another. I’ve always been fascinated by the interpretative nature of language.
That’s a big reason why, during my years as a legal reporter, I loved reading court rulings to see how words and sentences were regarded in the eyes of the law.
For example, who knew the courts could base entire decisions on the word “shall”?
Experts would delve into dictionaries and historical documents to explore what constitutional scholars from 200 years ago might have meant by that word when they chose it, and how the meaning may have evolved into something different now.
It’s all quite fascinating.
We have some of the same kind of wordplay issues right here in our own Diabetes Community, particularly when it comes to the use of the word “diabetic” to describe someone who lives with this condition.
Whether that term is offensive or not has been hotly debated over the years. Many people have adopted what they view as a more empathetic term: “person with diabetes,” shortened to PWD.
Every so often this controversy bubbles up again as a hot debate. For example, U.S. News & World Report picked up on the issue at one point, running a piece with the headline Why ‘Diabetic’ is a Dirty Word.
Some folks come out strongly with the argument that you wouldn’t call a person with cancer a “cancer-atic,” and so on. All the arguments against the term seem to be derivatives of these main points.
First, as laid out by the U.S. News & World Report article:
“… a diabetic or a person with diabetes? The distinction may not sound like a big deal to you, but to those with the condition, it’s the difference between living with the disease and letting the disease control their life.”
Second, as expressed by numerous D-peeps in that story and online: Many feel the term “diabetic” is a negative label that overshadows whatever else these people may be in life:
- I am more than my diabetes; this disease doesn’t define me.
- Other health conditions aren’t called “cancer-atics,” “ALS-ics,” so why should only D-folks have such a label?
- The label implies guilt, that the person somehow brought the disease on themselves.
Our own Amy Tenderich, founder and editor of DiabetesMine, wrote back in 2007:
“A writer, a mother, a brunette, a diabetic — all these terms describe me. And I don’t take offense to any of them, because to me, none of them are derogatory.
I realize that the diabetes community is pretty much split down the middle on whether to insist on being called a ‘person with diabetes’ rather than ‘a diabetic.’
But there are so many terms and labels bouncing around the diabetes arena, my personal take is that we ought to seek some clarity and stop getting insulted (i.e. agree on definitions and get over the emotional baggage).”
I happen to agree. In addition to being a person with type 1 diabetes, I’m also a husband, son, uncle, friend, journalist, history lover, genealogist, cynic, realist, beer and coffee lover, TV fan, and so on.
I personally don’t care what someone calls me when it comes to diabetes — except for that extremely judgmental medical lingo labeling patients “non-compliant,” as it implies laziness and casts shame.
But the term “diabetic” doesn’t bother me one bit. I actually prefer it, because it’s easier to say than “person with diabetes.” It’s how I’ve been talking about my diabetes for the most part since being diagnosed at age 5 back in 1984.
I love how fellow diabetes blogger and advocate Kerri Sparling is known for the signature line, “Diabetes doesn’t define me, but it helps explain me.”
That feels right to me. It implies that I get to choose when and how I’m going to wear any of those designations on my sleeve (although in reality, diabetes often does interfere with life in unwanted ways!).
Of course, personal opinions will continue to vary on use of these terms.
So overall, is this “label game” a topic worthy of national attention, calling for advocacy? That’s debatable too.
Through the years, the importance of recognizing the impact of language used in policy, medicine, and healthcare has grown tremendously. The hashtag and efforts around #LanguageMatters has been a growing movement in the diabetes space.
The national Association of Diabetes Care and Education Specialists (ADCES) has embraced this mantra and is leading the charge on how healthcare professionals (HCPs) and people with diabetes (PWDs) choose their words carefully, both for personal interactions and when representing diabetes in public forums.
One notable expert on this front is Dr. Jane Speight, a health psychologist in Australia who has been a leading voice on this issue for many years.
In early 2021, Speight was lead author on a
“Changing the language of diabetes can make a powerful and positive difference to the emotional well-being, self-care and health outcomes of people affected by diabetes,” the statement says. “It also affects community and government support for funding diabetes care, prevention and research.”
“At its best, good use of language, both verbal and written, can lower anxiety, build confidence, educate and help to improve self-care,” the England statement said. “Conversely, poor communication can be stigmatizing, hurtful and undermining of self-care and can have a detrimental effect on clinical outcomes.”
Here in the U.S., one expert who’s published research and advocated on this issue is Jane Dickinson, a DCES who lives with T1D herself and was named Diabetes Educator of the Year in 2019 by ADCES.
Her 2018 study, The Experiences of Diabetes-Related Language in Diabetes Care, showed evidence that among the 68 focus group members, negative words led to experiencing feelings of judgment, fear, anxiety, misunderstanding, misinformation, and disconnection.
Body language and tone mattered too.
“Participants… raised a concern that current negative words will be replaced by others with similar negative connotations; and they said they would feel more like a partner in their care if HCPs stopped using these words,” according to the study.
“This study suggests that the time has come for a language movement in diabetes care, and the first step is awareness… Words are part of context, and through context, people with diabetes shape meaning and understanding.
“Using messages and words that are consistent with those approaches can improve communication and relationships between patients and providers. Beginning with the first encounter at diagnosis, using messages that impart strength and hope could make a difference in how people feel about and manage diabetes and their overall health,” the study concluded.
Importantly, the study found that HCPS should use person-first language rather than putting an emphasis on the condition itself.
Thankfully, a growing number of HCPs have been embracing approaches that empower PWDs, Dickinson told DiabetesMine.
With so many important issues calling for advocacy efforts in the diabetes space today — access, affordability, healthcare equity, and a need for mental health resources — some may argue that investing in changing language is a trivial endeavor.
But the larger point is that language and communication are hugely powerful in politics and across the board.
For example, think about how political catchphrases and labels have become so divisive in recent years.
(On the latter front, advocates have made the strong argument that no human being is illegal.)
Clearly, some people feel that being labeled “a diabetic” is dehumanizing to them in the same way.
Whether or not you happen to agree, language choice also plays into protecting us against discrimination at work, or being judged by society at large as being “at fault” for our disease.
That judgement also fuels the discord between people with type 1 and type 2 diabetes, where tensions can run high. Is one group “more innocent” than the other as far as causing their own health issues? Pointing fingers helps no one.
We at DiabetesMine have long been sensitive to labels. This is why we standardized “person with diabetes” or “PWD” a while back. We do hear that some people find the term silly, or an exaggeration of the trend toward “political correctness.”
Whatever the accepted label, those of us with diabetes are all people first, disease second.
That’s a message we’ve been championing among the medical community for a long time: We’re not just textbook cases. Each person’s D-management should be tailored to what works best for them as an individual.
So, yes, “diabetic” does seem to be a word that we’re collectively phasing out, gradually.
Whether it’s ever stamped out entirely, we probably won’t be around to see. Funny to think that future generations may look back on earlier work and have to ponder the intended meaning, just as judges and lawyers now wonder why certain terms were ever used the way they once were.
Mike Hoskins is managing editor of DiabetesMine. He was diagnosed with type 1 diabetes at age 5 in 1984, and his mom was also diagnosed with T1D at the same young age. He wrote for various daily, weekly, and specialty publications before joining DiabetesMine. He lives in Southeast Michigan with his wife, Suzi.