Diabetic vs Person with Diabetes -- what's in a name?

Interesting editorial on language. I have always gravitated to “diabetic,” but can understand the usage and embrace of PWD, too. This condition is definitely so central to who I am that the “-ic” resonates with me. I appreciate the editorial and believe there is room for all language (you just need to listen to and respect the person with the condition).

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I feel like this comes up every so often in the diabetes world. Define yourself how you want to. It’s your body, life, identity, whatever. But I’ve always rolled my eyes at “PWD” :woman_shrugging:

I work with kids with hearing loss and tell them the same thing - some kids say they are deaf when I would not classify them that way, but that’s not my place to tell them how to identify themselves.

(FWIW I always say that I’m diabetic, too!)

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Thanks for sharing @JessicaD. That was an interesting commentary.

I encourage everyone to use the language that they feel most comfortable with. But here are my thoughts on it.

I do not personally care too much for being referred to as a Person with Diabetes. If someone called me that, I would think they are trying too hard to sanitize it and be sensitive to me. I don’t need that.

I also don’t like being referred to as the noun “diabetic”. I am not defined by it. Yes, I have diabetes. But I don’t need to be put in that box.

I say “I have diabetes”.

Just like if you have a cold you say, “I have a cold”. You don’t same “I am a coldic” or whatever.




I liked the article because there are things in there that I agree with, and also things I strongly disagree with. So they have both sides for me, which makes it a great perspective.

Strongly disagree: :arrow_down:

Hear me when I say this: I am a diabetic, and you are mistaken if you think I’m not defined by it.”

Not me: :arrow_down:

My diabetes is the first thing on my mind when I wake, the last thing I think about before I sleep

Totally agree: :arrow_down:

And despite what you might think, diabetes has, at least in part, made me who I am today.

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Agree with your agrees/disagrees! :white_check_mark:

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I personally don’t care one way are the other, however, others do. The problem is which to use when you don’t know the preferences of others.

Then there are people with one of 4 diseases diabetes Insipidus, which doesn’t involve glucose management.

I don’t like generic words like diabetes alone. It needs to be more specific with Insipidus or mellitus and the specific type.

Just saying diabetes is way too vague. It just describes the common symptom of all 7 diseases, polyuria. Insipidus that the urine is insipid, nearly pure water. Mellitus that the urine is honey sweet.

All DM needs further specific, the type.

I prefer to preface with autoimmune type 1DM, pancreatgenic type 3c DM and insulin resistant type 2DM. The addition of a few words saves a lot of confusion.

Recently I saw where type 1 DMs wanted a new name because of being confused with T2DM and the unwarranted stigma dumped on us.

A bit off topic, but what you call me doesn’t really matter.

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My FUD profile shows me as having Type 159. And Type Unlimited.

Why? Because I think we all have a totally unique disease. Mine is unlike anyone else’s.

Whenever I am asked, I say Type 159. That quickly ends the conversation because they can’t say anything like, “Oh my neighbor’s sister has Type 159 also! And this is what she does…:joy:

image

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First, thanks @JessicaD for posting this. I don’t think I would have seen it otherwise, and it’s in my hometown paper.

Seems like everyone is in pretty strong agreement about tolerance.

Personally, I identify as diabetic, Type 1. @Eric, is the type 159 based on any particular framework or science? I’d be happy to be Type 220 if anyone could more precisely identify my particular strain.

As many of you may recall, I was diagnosed as a T1 diabetic when I was 50 y.o., and I wasn’t sure how to present this diagnosis to the world. If I was interviewing for a job, for example, did I need to let the prospective employer know my condition (my counselors said ‘no need’)? Was I disabled?

Looking back on it (after about 10 years) I think early on I tended to overshare - to let too many people know about my condition. At this point, I don’t bring it up, except when someone (usually a kid) asks about it, and I’m usually grateful for that conversation.

Now Pandora is out of the box though – I hope I will be able to forget about PWD as a term to use. For me, it seems less accurate than “diabetic.”

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Unfortunately, I couldn’t read the article without subscribing to the Boston Globe. Hate that when it happens but it sounds like you all were able to read it and it provided good “food” for thought! I, too, am not too concerned what term is used. I don’t frankly know the difference, if there is any, between “diabetic” and “PWD”. I assume we are all people, and we all have diabetes. I agree with Carlos though in that it is important to identify the type of diabetes in some situations such as medical exams! I don’t like being the center of attention in general so I certainly wouldn’t like someone talking about me as a “diabetic” or PWD. If it needs to be known, fine.

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Ha then I am type ≈π. An irrational number because that fits.

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@trying, here’s the article fyi - you can read it on the board.

I am a diabetic — not ‘a person with diabetes’ - The Boston Globe

Summary

The Boston Globe · by Linda Nelson

I was once chastised by a young diabetes educator when I referred to myself as a diabetic.

“You are not a diabetic! You are a person with diabetes. You are not defined by it.” Her indignation still rings in my ears.

This was my introduction to a now-prominent dictum of care for type 1 diabetes — and many other conditions. In that moment, had someone snapped a picture of my face, it truly would have said a thousand words. Not one of them kind. And if I’d succumbed to my emotions, a curt “Excuse me?” would have been my response. Thankfully, shock held my tongue. It was neither the time nor the place and would have accomplished nothing.

We live in a day when the measure of our moral character often seems to balance on our use of the acceptable word of the hour. But my issue here is not lexical. It is philosophical.

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Over the years I’ve thought many times about that exchange. I’ve chuckled over it with my diabetic daughter and with my niece, who witnessed the reprimand because I was standing next to her hospital bed just hours after she’d been told she was a “person with diabetes.” Since then, I’ve had the time and emotional space to compose the response I wish I had offered, which is this:

“I mean no disrespect, and I speak only for myself, but I must disagree. I am a diabetic. I am also the mother of a diabetic, now the aunt of a diabetic, the first cousin of a diabetic, and the first cousin once removed of two diabetics — one a generation before, one after. I’ve been a diabetic since before you were born. I had been a diabetic years before the glucose meter was invented and decades before the insulin pump. I’m one of the few diabetics in the world who has received an islet cell transplant and one of the fewer still in whom that transplant worked for many years. My diabetes is the first thing on my mind when I wake, the last thing I think about before I sleep, and often something I must address in the middle of the night. It is a consideration in dozens of decisions I make every day, never far from my mind. I could go on, but I hope I’ve made my point. Hear me when I say this: I am a diabetic, and you are mistaken if you think I’m not defined by it.”

How I wish I’d been so quick and so composed.

I stand by my statement. I am a diabetic. That’s not to say it’s all I am: I’m also a wife, a mother, a daughter, a sister, an aunt, a friend, a Christian, a book lover, a writer, an adventurer, an explorer, and so many other things that are the very fibers of who I am. And if I were not a diabetic, my life would be something quite different. Would it be better? I’m not so sure.

I’ve often thought about that hypothetical: a life without diabetes. And every time I do, I find myself in the same place, though it’s a place many won’t understand. The truth is, if I were offered a chance to live life moving forward without diabetes, I’d jump at it. In fact, I did just that when I entered the islet cell transplant program and was given a six-year reprieve, though that had its own costs. But if the offer was to go back and start my life over with the promise of never having the disease, I think I would decline.

I know it sounds unbelievable; even I cannot always make peace with that idea. But by erasing the disease I risk erasing elements of myself that exist because of it. Diabetes made me strong, disciplined, and independent. It made me a problem solver, an advocate, a strategist, and a realist. I became sympathetic and empathetic to the struggles of others. Diabetes forced me to know my body, to listen to it, to work with it, often to work around it, and to give it rest when it needs that. And I understood very young that life comes with hardships, my attitude toward them is a choice, and I cripple myself if I choose to be a victim. This is why I cannot countenance the idea that diabetes does not define me. I would be someone else without it. But it has no power over how it defines me. That’s my responsibility.

All that said — and this is where it gets complicated — when my daughter was diagnosed, I shook my fist at heaven and wept every single day for a year. Then my heart broke when I got the call that my niece now stood with us. I knew what lay ahead for them and I didn’t like it. For years, I wrestled with crushing guilt over my daughter’s diabetes, as if it were my fault. Of course it’s not, but I struggled nonetheless to come to terms with it. Then, a few years ago, I asked my daughter the question: “Given the choice, would you trade your life for one without diabetes?” A few months ago, I put it to my niece. I’d never shared my own exploration of this idea with either of them. Yet, with no leading, they each paused and then answered the same: “I would not.”

I smiled when I heard their responses, though I’d be lying if I said I am sure that’s the right answer. But these two are fierce, strong women who have taken on diabetes fearlessly. They, too, would be different people without it, and they have decided who they are with it. I treasure the bond that diabetes has given me with these women. It couldn’t exist any other way. Some wonderful aspects of our relationships are absolutely defined by diabetes. That alone might make it all worth it.

So here’s what I’d like to say to the medical community: I understand and commend your intentions. Living with type 1 diabetes is challenging. Raising a child with it is exponentially more so. But simply nuancing the words we use to talk about it does not make it easier. In fact, I think your approach might make it more difficult. When you suggest that I’m merely a person with diabetes you compromise my power over it. You suggest it is something I must separate from myself and hold at arm’s length. But I will not do that. I acknowledge it, embrace it, and cooperate with it because it is part of my DNA, literally. I’m the one in charge. And despite what you might think, diabetes has, at least in part, made me who I am today.

Linda Nelson is a principal and director of content development at The Basis Group, a marketing and brand strategy firm. The essay was adapted from a post she wrote for her blog, Diabetes Chronicles.

The Boston Globe · by Linda Nelson

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Thank you, @bostrav59 !!

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I was given that tag by a doctor several years ago. (It was my dear friend Dr. LarissaW.)

It was a reference to how I don’t do it the way most D’s do it, and I did not fit the normal “Types” they have. I had my own unique Type.

So no, it was not very scientific. :man_shrugging:

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I’ve got no problem with being called “diabetic” but self-identify as “I’ve got diabetes, have had it for years.” Interesting article but I find her type of navel gazing a little tiresome and don’t engage in many of her attitudes.

I can only describe my attitude toward my diabetes as “so what”. To friends I’ve described the day to day as just one more step needed to keep fuel in the tank. I’m comfortable parading around a locker room, beach, pool, etc with my pod and CGM out there on arm or belly which in a way announces my diabetic-ness to other club members but is just a curiosity to strangers. I’m always surprised at how rarely anybody asks about it or comments.

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I’ve read all the comments and preferences and can appreciate all the perspectives. I’d like to use the preference of each of you when talking with you, but I’m realistic enough to admit I’ll not likely remember them unless prompted by you, no offense intended. As for myself, I find PWD in reference to myself as a euphemism I’m not likely to ever use reference to myself. But, if you’re concerned and want to use it about me, so be it, I’ll not take offense. I was diagnosed originally as a person with Type 2 diabetes, then as Type 1 diabetes, and that’s fine as well. I’ve used the term diabetic, because it’s more direct, to the point, and accurate. If it turns in to a common slur, I’ll not likely continue to appreciate it. My emphasis isn’t what I call the condition, but how I treat it, deal with it, and, hopefully, someday overcome it and return to being a person without the distinction; one that can eat what I want, when I want, as much as I want without worrying about the medical impacts. Until then, call me what you’re comfortable with within reason and about the condition as long as you try to understand it. I don’t hide it, never have, probably over-shared it, and try to educate the “obviously” ignorant about it so they and others with it are understood and treated appropriately and with the respect they otherwise deserve.

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To my wife, sometimes I am a PWSNAJITMOTN.

Person Who Sometimes Needs Apple Juice In The Middle Of The Night

:sleeping:

And in my defense, I always tell her, “I didn’t wake you up, the Dexcom did!”

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I have no problem to which name is used by anyone to refer to my diabetes.
Although now that I have had diabetes for almost 59 years, the label of juvenile does seem strange. But a reminder that in early days, many did not get to live to be adult T1D diabetics.

I’m usually more impressed with those that are curious about my pump or cgm and usually enjoy the time answering questions.

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While that phrase may still be in the common lexicon, it is not acceptable in scientific/medical circles. It came about because so many with autoimmune type 1 DM were diagnosed as youngsters. It was thought to be a childhood disease and was never contracted in adulthood.

I remember that Mary Tyler Moore was considered an outlier contracting juvenile diabetes at age 33 in 1970.

Because in adult onset type 1 diabetes mellitus the destruction of the Beta cells tends to be slower, my guess is that until someone like MTM was diagnosed, many who developed T1DM as adults died undiagnosed from cardiovascular or kidney failure. The diagnostic tools available today are much better than those of 5 years ago, much less 50.

The organization now goes simply by the name “JDRF.” It removed the word “juvenile” from its name for two reasons: First, the disease is now known as type 1 diabetes, or T1D, not juvenile diabetes. Second, T1D can strike at any age, and market research has shown that 85 percent of people in the United States with the disease are adults-some who were diagnosed as children, and others who were diagnosed later in life. By using only the acronym JDRF, the organization aims to better reflect its commitment toward all people with T1D.

JDRF’s refreshed logo not only removes the organization’s former name, but also incorporates a “T1D” symbol, shorthand for type 1 diabetes and an effort to distinguish the disease from type 2 diabetes. Unlike type 2 diabetes, T1D is an autoimmune disease with no known cause or cure, in which the body’s immune system attacks and destroys insulin-producing beta cells needed to turn food into energy for survival.
JDRF Changes Name and Logo - Diabetes Health

Sometimes I’m a bit slow to see what is right in my face. I never saw T1D in the Logo until reading the above. Pretty cool, pretty clever. Perhaps the J curve will get shortened. Nah! There is good reason to keep a historical reference.

Cases of genetically defined type 1 diabetes were distributed across the first six decades of life (Figure 3, Figure 4). Of 1286 individuals with type 1 diabetes, 537 (42%, 95% CI 39–45) were diagnosed when aged 31–60 years and 749 (58%, 55–61) were diagnosed when aged 30 years or younger (p<0·0001). Type 1 diabetes accounted for 537 (4%, 4–5) of the total 12 233 diabetes cases diagnosed between ages 31 and 60 years and 749 (74%, 71–76) of the 1017 diabetes cases diagnosed aged 30 years or younger.

Frequency and phenotype of type 1 diabetes in the first six decades of life: a cross-sectional, genetically stratified survival analysis from UK Biobank - PMC.

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thanks for this Carlos. My grandfather (on my mother’s side) died of a heart attack at 65 in 1964. I suspect he may have been diabetic but undiagnosed …

e

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I think this is what’s wrong with lots of discussions about this topic. This moral absolutism that either term is totally wrong, that using one term or the other means that you’re “defined” by it or other things deemed wrong. These terms have different meanings for everyone and everyone has different feelings about them. That’s OK. People should just stop language policing others and let each other use whatever terminology they prefer.

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Thanks @Boerenkool

Just wanted to note that this was not my personal experience. Mr B. is excerpting from an article in the Boston Globe that I posted.

For me, as for many of you here, all of this is ‘much ado about nothing.’ But i always find it useful to see if there’s a range of perspectives.

e

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