Identity and the Diabetic

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This was originally posted to my blog site, Diabetes Odyssey.

I’m sure most people who are or care about someone who is diabetic are aware of what has been going on with the Crossfit CEO’s uneducated statement about diabetes. I promised myself I wouldn’t write about it, and I am keeping that promise. The only reason I make a short mention of it here is because it is, for the most part, the way I came up with the idea to write down my thoughts on identity and the diabetic.

If you don’t know about the Crossfit CEO/diabetes fiasco, go ahead and look it up.

I have always been a stickler about telling people what type of diabetic I am. When I tell them I am diabetic, I say:

“I am type 1 diabetic.” Not, “I am diabetic.”

Why is it so important too make the distinction? For me it’s a number of reasons. Mainly it is an identity thing. Being diabetic means that diabetes (whichever type you have) is a huge part of your identity. Diabetes is in every part of your life, everything you do, every habit, every routine, every thought, every decision, everything has diabetes attached to it. It is not your entire identity, but it is a big part of it.

So, you don’t want people to make mistakes about your identity, about who you are. Someone thinking you, a type 1, are a type 2, or vice versa, is like them thinking your name (Tamra) is Tracey. It’s just not right because it’s not you.

There is also the distinction between types of diabetes and what they are. They have two different names because they are two different diseases. Mistaking a type 1 for a type 2, or vice versa, in a medical environment can become quite deadly. That is how different they are.

Type 1 and type 2 are both types of diabetes, but they are profoundly different when you get down to the nuts and bolts. So you can understand why a diabetic would want everyone to know exactly which type they have, and why most diabetics get all hot and bothered when all types are just lumped together under one vague, uneducated, misinformed title or definition.

Then you get to education. Most diabetics, no matter their type, know everything about all different types of diabetes. Beyond needing the information for their own health and well being, they need it to educate people about their type of diabetes.

I’m a type 1, but I know all about type 1 and type 2 because when I talk to non-diabetics they tend to only know about type 2 or the vague idea of what diabetes is, and even that information is totally misguided and outright wrong. So in order to spread the truth, I must be able to teach them about both type 1 and type 2.

It’s an identity thing, if a person doesn’t understand my type of diabetes, then they can’t truly know who I am.

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Thank you. Your post was very helpful to me and made a great deal of sense.

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I behave in the same way, Tamra. I do say I am diabetic first, then say T2. It usually gets their attention first with an Ohh how terrible face, and then when I say T2, the face changes and they say something like: “oh that’s the good kind.” And I’m IN—hehe…Yup–it’s all about education, which is all about getting their attention however one can…

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Your post spurred a couple of thoughts. The short one is that I generally find most people, when I say I have “Type 1 diabetes,” hear “diabetes” and don’t hear “Type 1” or at least don’t have a clue what it means. They may be vaguely aware of it as something kids get, but if you’re an adult the distinction doesn’t enter their heads unless you make quite a point of it. Wondering if you find that as well?

This also had me thinking:

I know there are T2s around here for whom this is as true as it is for T1s, but given the much wider range of severity in T2 I’m not sure it really weighs out the same across the board. For one thing, there’s the fact that most of us get T1 when we’re younger, so it’s more deeply ingrained in our sense of who we are, versus how you’re going to experience a condition that shows up in your 40s-60s when so much of your identity is already established and rooted in other things. I have a good friend who was diagnosed T2 about 8 years ago and recently when I asked him how that was going he told me he takes a metformin in the morning and never gives it another thought. I know we use “PWD” (People With Diabetes) to distinguish ourselves from our condition, but whereas for him it’s more accurate to say “I have diabetes” than “I AM diabetic,” for me the latter seems much truer to the emotional reality.

On edit: hope this doesn’t sound like I’m faulting what you said at all–I found it quite illuminating and well expressed. Just adding my own take.

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When anyone asks or brings it up, I definitely say that I have type 1 diabetes. People generally don’t know what that means, so then they ask questions and/or jump to conclusions.

My dad tells me that people who know me (in the city where I grew up and my parents still live) occasionally ask him if I “still have diabetes” - I guess that since I got diagnosed at age 26, they assume it must be type 2 (and they assume that it’s possible to cure type 2 diabetes - i wonder how often people ask my 96-year old grandmother if she still has [type 2] diabetes). He usually tells them that yes, I do still have it - there’s only one final ‘cure’ for it so far, and we’re not interested.

I’m often curious about my experience getting diagnosed as an adult - how would it have been different if I’d gotten it as a kid? What things would have been harder/easier/the same?
In this regard, I mostly wonder about my attitude towards having diabetes - If I’d gotten it as a kid, would I now be more able to accept having it? I frequently find myself irritated and in disbelief about it - “seriously? this will never end? this is a thing I have? forever? blarg!”

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I totally agree with you. Your very thoughts did cross my mind as I was writing my blog. I know many T2’s who don’t ever think about their diabetes. But we T1’s very much tend to have a much more intimate relationship with our diabetes.

Yes, I have experienced many people who just blank out “type 1” when I tell them “I am type 1 diabetic”. I always make a point to jump on that and teach them. In a kind manner, of course. It really breaks my heart, though, when I try to take the opportunity to explain types of diabetes and they just waive it off and change the subject. To me that’s like saying, “I really don’t care about you.” But I try to not take it too personally, they just don’t understand is all.

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The year I was diagnosed, many of my friends were having babies. These kids and their friends are the people to whom I have the easiest time explaining T1D. They often ask the best questions and are genuinely thoughtful about my answers. One of them (turned 7 this year) even keeps candies around and asks me how my blood sugar is when I seem to be out of it. Another used to ask me (almost) every time what my insulin pump is.

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Another great post!! Always appreciate your honesty.

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@DrBB,
I’m one of those folks that was diagnosed as T1 in my 40s and can say it’s become as much a part of my identity as anything else. At first I did the whole denial thing and went years thinking I was T2 (initially diagnosed as such when I was 35) but now that I know I’m T1 it’s never not part of me, just as Tamra described it.

I always tell people I’m a Type 1 diabetic, assuming it comes up, and get the blank look quite often, which I use to prompt a teaching moment as others have said they do. I also get mixed reactions, some people are genuinely interested while others humor me and listen.

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I am one of those T2’s that it is true for. You can’t do 3 bolus’s plus multiple finger sticks and corrections each day without feeling T2 is a large part of you identity. I’m not saying that to disagree but rather to agree. There are large numbers of T2s that do not realize just how much T2 effects them or will effect them in the future. That is the insidious part of T2 it leads you to believe it is not a big deal until much much later. If more would accept it as part of who they are they would be much better off.

Because I carry an insulin pump my diabetes treatment does not look much different than that of a T1 but I cannot identify with T1’s, I can understand somewhat what a T1 goes thru but I cannot truly know what it is like. I will keep on being Gary a person with type 2 diabetes and will try to educate the would about the types of D if they are willing to listen.

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I totally get that. I think I said in another thread that the “advantage” of T1 is that it is so acute to begin with that you just have to deal with it, whereas T2 commonly presents in a more gradual way that affords more room for denial. The fact that it usually starts later in life figures into it too, because for most people the older they get the harder it is to change habits around eating and exercise and whatnot. By which I don’t mean to imply that T2 is a “lifestyle” disease; just that dealing with any form of diabetes requires you to make a lot of changes if you’re going to keep it in control.

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I enjoyed your post and have felt the same way. I was diagnosed at 57 with DKA with BG of 1141. I turn 60 next month. Since I am still just a toddler at this whole control thing, I sometimes “forget” about my constant “friend” D and I get into trouble. (low bg) I really want to live my life believing the best is yet to be and that although I have diabetes, there is SO much more to me. Both of my younger brothers are T1. I like what my youngest brother says (diagnosed at 3)…“Everyone needs a hobby.” Grin. I am BEGINNING to be grateful for D. Somedays though my attitude just stinks to be perfectly honest. However with the tedious also has come some rewarding benefits. My eyes have hopefully been opened to others with life challenges and pray that my heart softens with understanding. I truthfully don’t know much about some of the things they deal with every day. They probably feel the same way we do when people don’t understand about us. We are all on a journey and thank God that I am still on it.

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I avoid using the term “diabetic” except in the context of the old “Diabetics who run Marathons” group here. Sometimes it can be cumbersome to use the term people with diabetes however I think that it’s more humanizing and appropriate and dislike the ontological implication of the term “diabetic”, irrespective of type. I suppose it’s possible that I miss one here and there but I think I’m pretty strict about it. I don’t really bust people’s chops about it that often however I prefer to speak that way. All types are more complicated than simply “name”, “symptoms”, “treatment”, etc. I have found that with many “straight” people, if I use “type 1” and sort of control that element of the conversation, they will ask follow-up questions and I can subject them to edutainment, tattoos, war stories, D-jokes, etc.

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I agree with a lot of what you had to say, Tamra. Diabetes is a HUGE part of my life. It truly is a part of every single decision I make. I’ve had to turn down jobs because I knew the stress of the schedule would burn me out and my blood sugars would go crazy. It affects how I socialize with people, whether or not I can safely drive a vehicle, if I’m going to spend all day fighting a massive headache and nausea from the high blood sugar I woke up with, and it even affects what restaurants I choose to eat at. There is nothing that DOESN’T affect my numbers. At work, I’m the diabetic girl who doesn’t eat the birthday cakes we frequently have for employees and who brings “gross green juice” to work for breakfast.

Sometimes I think about what my life would be like if I were to someday be cured of my Type 1 Diabetes. I just can’t imagine it. All the time, energy, devotion and passion I put into taking care of myself and managing my blood sugars would suddenly have to find a new outlet.

It amazes me to think about how all consuming, even to the point of changing ones identity, diabetes can be.

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I believe that the two types are more same than different. We all need better use of insulin and we find ways to enhance that process. I am so upset to hear of people who try to separate the types like one is more or less harmful than the other.

Tamara nice post, i adore the way you write. . You rock girl.

rick

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I sometimes mention that I have Type 1, but sometimes I just say I have diabetes, or that I’m diabetic. Language really doesn’t matter that much to me, as long as it’s not outright insulting in the way it’s used. Most of the time, when I’m talking to people, they don’t need to know (or care) what type of diabetes I have. Even if I told them I had Type 1, they would have little idea of the amount of work it takes to control blood sugar on a daily basis. If they have questions, then of course I’m open to answering any of them.

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Yeah, it’s a part of my identity but I’m many things in any one day.

I’m a sleeper, walker, talker, listener, dog companion, father, brother, friend, eater, driver, reader, writer, manager, info junkie, dreamer, complainer, complimenter, repairman, breather, and underdog fan.

Diabetes represents a potent opposition force in my life. It hones my determination, fuels my motivation, and focuses my better self. I have no problem with the more concise “diabetic” and alternately use “person with diabetes.” I mean no ill intent if I slip and the older term offends. Change does get harder with age, but I work at it!

Oh yeah, I’m also a procrastinator, a fan of leisure and a retiree. Diabetes is but one facet of my reality.

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I have been a T1 diabetic so long that I have grey hair and kids going to college.

I feel (outside of the particular cause of my endocrine disfunction) I have a lot more in common with many T2’s here than with the college/young-adult T1/LADA crowd.

I do not think my T1 endocrine disfunction and associated constellation of symptoms and treatments, describes “truly who I am”. I’m happy it is quite low down on the list of how I think of myself as a person.

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I’ve listened in on conversations where one or more persons argued that type 2 diabetes should be totally renamed so people wouldn’t confuse the two. I personally believe that to be a not so good idea. I think education is much more effective. Just changing a name isn’t going to help people understand the disease.

And I totally agree with you on the more or less harmful part. They both have equal potential for harm. I get frustrated with people who say things like, “Type 1 is the bad one”, or “you have type 2, so it’s not so bad”. Gah!

They are both diabetes, just different types because they have differences. When I teach people about the different types of diabetes, I teach them in a manner that makes it clear that they are not the same, they are different. The reason I press this is because 9 times out of ten the person(s) have always assumed they were the exact same. To them there are no types, just one diabetes. This always bothers me mostly because I’m just the type of person who can’t just sit by and let people believe something that isn’t completely true.

So, for me, it is easier to teach first the basics of what diabetes is to affirm what they may already sort of understand and help them to fully understand, and then teach them the differences between types.

I do agree with you that there are more similarities than differences between the types, they are both diabetes after all. :smile: But I don’t agree with lumping us all together under on general term. I’m very much a stickler for detail. Like I said, it’s an identity thing, and I need people to fully understand, not just sort of understand. :smile:

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The older I get, the more I find people will assume I have T2 (because the “bad kind” is something you get when you’re a kid, right? Aren’t you too old for that?). This shouldn’t bother me, I suppose… but it does. I guess that’s a measure of the degree to which the disease is mixed up with my sense of identity. And of course I’m not immune to the “lifestyle disorder” assumptions about T2, so there’s that. Bad enough that their assumptions are all wrong, but they are incorrect assumptions about a disease I don’t even have. I usually feel like if I get the second part of that confusion untangled I’m doing fairly well, given how short the attention span for this stuff generally is. And with some people–notably a person in the choir I sing with who thinks herself a great expert on all things nutrition related–I’ve revisited the issue a number of times with only limited success. “I brought cookies, and also some fruit and crackers for you because I know you can’t eat sugar!” Sigh…

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