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Guest Post: Type 3 Diabetes?

Today's guest post is from one of my favorite "kid with diabetes" moms - Moira McCarthy.  Moira is a champion for kids with diabetes and their parents, and she's recently joined the blogosphere with her blog at Despite Diabetes.  Moira, in her words, "hopes to be an unabashed voice in the world of working toward a cure."  And today, she's sharing her voice here on Six Until Me.  

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Thank you, Moira!Having been in – and quite visibly in – the type 1 diabetes world for a very long time now, it’s hard for me to go anywhere without some kind of D-nection (diabetes connection) surfacing.

A recent ski industry cocktail reception was no exception. The room was full of outdoorsy types. Burly men, women’ with tele-butts, everyone either spotting a goggle tan or envious of those who had one. A friend told me there was someone a simply had to meet: a man who ran a large Nordic skiing operation. But he didn’t want me to meet him because I write a ski column for a daily newspaper or because I work for SKI Magazine. “His wife has diabetes – and she just had a baby,” my friend explained. He went and got the man and introduced us, saying “The baby is two months old now and the baby and the mom are fine.”

Knowing what I know and understanding what I do, I did what came naturally: reached out, gave the man a giant hug and then looked him in the eye and said, “You are my hero. I know what you have been through these last couple of years and I know what you personally did to make this all possible. As the mother of a young woman with diabetes who hopes her daughter some days meets someone like you I just want to say: Thank you.”

The burly man immediately burst into tears. I was, he told me, (a little embarrassed by his reaction; made me think of that Seinfield episode [“What is this salty discharge coming from my eyes?’]), one of the first people to say out loud those words. And while he didn’t want credit (his beautiful daughter was quite enough, thank you), he did appreciate that someone got it. The whole experience had been intense for him, not just his wife.

I tell this story because of the recent push to call those of us in the club I’ve been in for 14 years now – caretakers and loved ones of a person with diabetes – “Type 3’s.” I guess the idea is that we kind of “have” diabetes too. True, it’s with us 24/7. We have to read about it, learn about it, worry about it, battle it, figure it out and sometimes, let it beat us down a bit.

But I’m calling Bull-sh**. I don’t like the term Type 3. I don’t like the idea of us being called anything close to “having” any type of diabetes. Because you know what? As much as the past 14 years of my life have been nearly consumed by this ridiculously complicated disease, there is absolutely no comparison to what it has done to my daughter. And frankly, the idea of “taking” any part of the name seems, to me, somewhat self-serving and whiny.

Here are my reasons:

First of all, whether we parents and spouses and siblings want to admit it or not, we can take time off. Look, I’m a person with absolutely no family help through even the young years of my daughter’s diabetes. Not that my family didn’t care; they did and do. But I’ve never been one of those people with the grandparents who practically live in the house; I never had a family member who totally knew how to take care of my daughter. So it was all on me. But .  . . there was the two weeks of diabetes camp every year when I knew she was safe and I checked out of the diabetes world completely. There were the times I just took a day and went and walked the beach while my husband minded the “diabetes store.” Was it with me always? Absolutely: but not in a way that claimed all my existence. Sometimes I worry that some parents (and loved ones) take too much on personally, and make it too much about them. I remember when my daughter was diagnosed, I said to the endo “I’m going to have to quit my ski job now. How can I travel with this?” To which he said: “You really want to lay that kind of subliminal guilt on your daughter? The best thing you can do for her is LIVE YOUR LIFE. Show her that diabetes cannot completely own anyone. Set the example.” He was, and is, so right.

Second, while there is no question diabetes has etched itself permanently into my psychological and physical being (thank you, diabetes, for the gray hair at 37), in no way has it done that in the way it does to a person with diabetes. My heart may ache sometimes but never will it be actually damaged by the impact of diabetes. I might be tired after a night of crazy blood sugars that concern me; but never will I know what the physical impact of highs or lows feel like. My eyes may be blurry one morning after having to do a check in the middle of the night, but never will diabetes rob be of actual eyesight. In the end, the impact diabetes has on me can be soothed by a long walk on the beach, a support group of good friends who get it, a good hair dresser and – in the case of that burly man I met – a hug and some kind words from a stranger.

Third, I think the whole “Type 3” thing confuses the issue and cheapens it somewhat. For all our hard work on getting the world educated about the difference between Type 1 and Type 2, we’re going to throw another one in the mix? Rather than muddy the waters of public perception, I’d rather clear them up. Do you really want to add having to explain what “Type 3” is to your elevator speech on diabetes 101? I don’t.

I also guess I don’t know why anyone thinks our group -- loved ones and caretakers of people with diabetes -- needs a label. We are who we are. Some of us are warriors in a public way: storming Capitol Hill and demanding funding for a cure. Some of us are master fundraisers who channel tons of money to research. Some of us are quiet, hard-working souls just trying to keep things right on a daily basis for our loved ones. Some of us are burned out sometimes. But none of us “have” diabetes. And if you ask me, if we allow ourselves to be called “Type 3’s,” we are, in the end, letting diabetes have us.

We cannot do that. Because as cliché as the saying is, just like on an airplane, the best thing we can do for our loved ones is take care of ourselves first. Look at that man I met. He was at that party having traveled a few states over for a long weekend away from his wife and new baby, taking a few days away from diabetes to have some fun, let it go and return home refreshed and ready to help his wife with the challenges of nursing and Type 1.

Did getting away from diabetes completely for a few days make him any less of a hero and a man? No more than those poignant tears did.

I say if you need a name, join a group. JDRF. DRI. ADA. Whatever. I just hope we drop this whole Type 3 thing.

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Thanks for your perspective, Moira.  What do you guys think of the whole "type 3" thing?  Do you use the term?  Is it on your radar?

Comments

Agree. 100000000% I'm a mom of a child with Diabetes. But I'm not a type anything. I get a break.

Though I enjoyed reading Moira's well-written post, and understand where she is coming from on these points, I can't say that I agree.

I have no qualms about using the term in the way I always present it: half-jokingly, and said with a smile.

I agree. There should not be a 'Type 3' label.

For those who live with people with type 1 - you are heroes:

... thinking of my youngest daughter who had to call a cousin to come help when I wouldn't wake up from a low),

... my husband - who not only dealt with my overnight lows several times a week before my pump but has been 1/2 of the diabetes care taker for our oldest daughter diagnosed almost 7 years ago. In fact - he's probably more than 1/2.

... friends, having to wait to eat until after I've checked my blood sugar. Or all hanging out while we wait for a high to come down before going out.

Their lives have been majorly impacted by type 1 diabetes for sure. They Walk & Ride to Cure Diabetes. They hold down the fort when I'm out advocating for a cure. But, when my husband travels for business - diabetes does not go with him. When my youngest is at a sleepover at a friends house - diabetes isn't on her radar. When my friends are out & about with others or in their own homes, diabetes does not slow them down.

If you have to label them - call them what they are: heroes & rockstars.

I never gave the term much thought before now but I also never used the term to describe myself. I must say, Moira puts forth a compelling argument though. I'd have to agree that it does confuse the issue. Like we need another "type" to try to explain to people as we advocate for our loved ones. And it does make us, the family members of PWD, sound kind of whiny. That is NOT an example I want to set for my children.

Awesome post!

Moira, I'm with you. I would never presume to call myself anything other than Marissa's dad.

I think anyone who genuinely loves and cares for a person with T1 would agree that we don't "need" a title. Being called "Mom" is pretty special in and of itself.

That being said, I genuinely believe this term was coined out of love and compassion by people with diabetes, because they recognize that loved ones are a solid part of their team. Knowing the motivation, and seeing the term evolve in online conversations, leads me to believe that no one was trying to diminish the impact that diabetes has in their own lives -- just simply trying to find an easy way to express how vital they see the role of support as they face one day after another, fighting a battle that sometimes feels impossible.

It doesn't bother me.

Sweet Child Of Mind, call me whatever you want...just know that I'll always be here for you, no matter what.

Type 3 has never been on my radar? When I saw the title I was curious because I had never heard such a thing.
I am very thankful that there are so many non diabetics that help me in this journey, but I agree they should not be labeled as having diabetes themselves.
Personally I don't like being labeled diabetic. A doctor I saw as a teenager asked me to never call myself diabetic, always say I have diabetes, but diabetic is a label that you put on something like calling an object damaged. I am a person who happens to have diabetes and those who care for me and the rest of us with diabetes are amazing humans and animals that love us with or without this condition.

I think it lends itself to the whole diabetic/person with diabetes argument. It depends on how seriously you take it. Do I think of myself as a T3? No. Do I personally use the term T3? No. When people use the term as a quick point of reference does it bother me? No. Even though I agree 100% with your argument...I always took the term in jest. I personally have only seen people with diabetes use the term T3. I always thought that it was sweet of them to ackknowledge the heart of their loved ones. No, it isn't nearly the life of a diabetic...but we put our heart and soul into it 100%. And that is something.

I couldn't agree with this more. I am the parent of a diabetic son and it would never cross my mind to describe myself with such a label. I am just a parent who loves my kid and will do all the things I need to do to help him whether that is with diabetes stuff, how to be kind, pee while standing up (he's 3), brush his own teeth or how to draw the perfect heart. Diabetes is just one part of all the thousands of things involved with being his mom. Some days diabetes demands being really high on that long list, but other days drawing that perfect heart is pretty damn important. I am a mother...that is my label in regards to my son. Plus, I get a break, he doesn't...that alone makes the T3 label seem false to me.

Oh and that advice from the endo to continue on with your life to set a good example...so awesome, so true!

This wasn't on my radar at all... but it's possible that I'm out of the loop about caretaker terminology debates. LOL

I would never call myself anything other than a D mama, (and D wife, and D daughter), and even that is only understood or related to by those who live it, (and if they do, it says everything they need to know).
Calling myself Type 3 could certainly confuse the few people I know who even understand what type 1 really means.

I live diabetes for my daughter as much as I can, but there is no doubt that she is the one who must endure it, always.

I'm not sure if I agree or disagree with the term Type 3, but that’s not what bothered be with this post. Yes, I can "take a day off" physically from being a care giver by not actually being in the same place as my husband, but that doesn't mean I take a day off from the Diabetes in our marriage. Maybe it's different for a parent than it is for a spouse. My mother in law stopped being a care giver long before we said I do. She just checked out from the enter situation. Her thought was once he as an "adult" it wasn't her problem anymore. I know she tries but she has no idea. Diabetes is a part of our everyday even if I don’t have it and even if I’m not standing next to my husband. Every long term choice we make is somehow affected by diabetes. When I go away for a weekend without my husband that doesn’t mean I’m not still thinking about my husband and his T1 the enter time. I am constantly checking in, I don’t sleep as well worried that he’s home alone and I wait for his good morning call. I may not know inside how it feels to be high or low, however, I know how those high and lows affect our relationship. Even our personal like is greatl impacted by blood sugar. It affects my relationships with my friends, my family and it greatly affects my future. Other people might not understand the effects of lows and high and see the "angrey low" as a problem in our marrage. As a parent you can love your child and hope for the best and yes that is always there but as a spouse this is your soul mate, your partner and your future I don’t want to be a hero, I want to be understood. There are tons of support groups for parents, and rightfully so. I have the utmost repsect for paretns of children with Type 1.
I have yet to find one for spouses. I love my partner and would never change anything about him he is amazing. I would just like to be understood too!

awesome read!

I agree with you Moira. My 3-yr-old was diagnosed 6 months ago and I am so acutely aware of how I get an occasional break from it and she never does.

I completely agree with every point.

My kids call me mom and that's a loaded (and wonderful) title that means a variety of things on many levels.

In writing, I often refer to myself as a D mama, and that, I believe, conveys the same message and holds the same meaning as "Type 3" without the confusion and without making light of what it is to actually have diabetes. It's a better moniker that better describes my role as the mother, primary caregiver, chief carb counter, insulin injector, blood sugar monitor, high and low treater,etc. In no way does D mama imply that I have diabetes, and that's good, because I don't. I simply love and care for someone who does.

THANK YOU! As much as I hate being selfish about this, sometimes we have to be. I couldn't have lived this long without support, but at the end of the day, I have diabetes and my mom does not. That's all. Thank you so much, Moira, for this post.

At camp they throw around the term "wannabetic" a lot for people who work at camp who don't have diabetes. This also drives me insane, why would anyone want this. Stop with the labels and start curing it so we don't have anything to label. I'd be ok with people calling me "that girl that used to be diabetic :)"

Thank you!!

To me, being a type 3 has nothing to do with *having* the disease. It has to do with it being part of your life on a full-time, regular basis. So what if you get a break from it? That's why you are a type 3, and not a type 1. The whole point of "labels" is to indicate what something is and what it isn't.

I would never use type 3 in a conversation with someone outside the diabetes community. That's just confusing. This is a colloquialism that is reserved for our community. And if someone is in our community, then we can share it with them. But I don't describe my fiance as a type 3 to strangers or to politicians. It would be confusing. The term is for us, to show that you are part of our team and that we get that this disease is an enormous part of your life. Maybe not your whole life - but again, that's why you're a type 3, and not a type 1.

I had no idea so many parents didn't like the term. Of course, I will certainly respect parents if this is a term that they find insulting or an exaggeration. But as a type 1, I use it lovingly, and I use it to acknowledge the hardships that my parents and my fiance deal with. I NEVER assumed that being a type 3 was "just like" having diabetes. It isn't, obviously. But living with diabetes as a caretake is *something* and that I felt that acknowledging everything they go through as being a "type 3" was a nice, simple way of including them rather than separating us. We are a team. A team of type 1 and type 3s. They are NOT the same and they were never intended to imply they are the same.

But like I said, I'll respectfully drop the usage of the term if it really upsets people. I'm just disappointed, because I thought we were doing a good thing.

As a long-time T1 who never really had a support system in place, I like the term.

"Caregiver" just seems so sterile and really doesn't cover what goes in to the type of support that type 1 requires.

As Allison said, being able to take a "day off" is what differentiates us, but at the same time; are you really able to "truly" take a day off? Especially where your children are involved? Honestly, I'm glad you are able to take that little break now-and-again, for perfectly selfish reasons. It could very well make it easier for you to support us when we get burnout.

Diabetes burnout is very real and many people don't want to discuss it. Viewing it as a sign of weakness, guilty that they are not doing all they "should". Doctors often are of no help and simply make the guilt worse by just looking at that "golden" A1c reading and judging our worth on that single measure.

That single measure that does nothing to indicate the day to day effort, stress, frustration and guilt that can come along for the ride. We feel those things and I suspect our loved ones do as well.

I've used the term in conversations outside the community, simply because it has become a part of my vernacular. I usually follow it up with "parents, spouses, caregivers".

I don't know if it takes an entire damn village, but it does take a team and your part is no less important than mine, even if it may not be as "visible".

I don't know, I'll certainly stop using it; but I do think that you are just a much a hero as anyone of us and deserve some type of recognition for that.

That is really how I see the term Type 3; as a distinction for those of you are on this ride with us, not only because you should, but most importantly, because you want to be here.

Amen! Totally agree, as the PWD and not the parent or the spouse. I understand that the caretakers/supporters are in their own difficult role, but in no way do they actually HAVE diabetes. They can sympathize all they want - they do not 100% understand. (DH and I just had this talk a week ago...)

This also reminds me of a blog I read recently of a PWD's wife who was frustrated by "all the work" she put into his lunches, making them low-carb and counting the carbs, etc., and then he would make the choice to eat chips instead. I thought, well so what? He's an adult. Yes, you are partners, but ultimately, it's his thing, his choices. As a loving partner, he SHOULD want to take the best care of himself possible, but you know? It's exhausting and we don't always do it "right." Don't guilt-trip.

I want my husband to care, to be concerned, to encourage, but I don't expect him to be "in charge" of any aspect of my D at this point. No adult with diabetes should be relinquishing their care to another adult without good reason.

If we really want to dig into this, the roles of parents of PWD and the roles of spouses/SOs are different (or should be) - maybe we should have even more terms!

Great post!

You're right. You guys that care about those of us with diabetes just are. You're our parents, partners, soul mates and friends. You don't need another label to define your relationship to our diabetes, because part of loving us is accepting our diabetes. It's a given.

I have heard of Type 3 but only in the DOC. The first time that I saw Type 3 I had to have somebody explain it to me! LOL

I have never referred to myself as a type 3. I'm Tristan's mom.

However, I don't have a problem with people using Type 3 in the DOC. I think that we all understand what it means and it's a quick and easy way to explain your role in diabetes.

Tristan was diagnosed with diabetes at 16 months. He's 7 now. I haven't had a break in 6 years! It doesn't matter if Tristan is physically with me or not, diabetes is always on my mind. If he's at school and the phone rings.... my first thought, there's a problem with his blood sugar.

Do I live diabetes the same way that he does... absolutely not. But I live it nevertheless.

I can see everybody's point. I think using or not type 3 should be a personal choice... but it should be a term that is reserved for the DOC.

As a person with diabetes, it is meaningful for me to connect those that support and love me to my challenge. It is meaningful when they take a bit of ownership in the battle. (as warriors with me) I am fond of T3 - it is a way for others to show their care for me and it is a way to show that there is a broader impact with this disease than most people think about. After almost 20 years with the disease, it is striking to me to see the pain and suffering in my loved ones. There is a real, tangible need for care for them - they live with chronic sadness and often depression. I don't see the harm in T3 -- as long as it is used in a positive, uplifting, supportive way. It actually makes me feel really good when people use the terminology and adopt an attitude of partnership.

I'm the diabetic, not my husband. He is no more T3 diabetic for me than I am T3 asthmatic for him. Describe yourself in terms of you, not in terms of other people! Be Mom, wife, carer, whatever, because those are labels that describe who you are, not what the people around you are.

I've never heard of this term type 3, and it makes no sense at all to me. lol Don't like it.

I have never heard of the term "Type 3". I think there is enough confusion with all the "types" we don't need any more labels confusing the public. I am a dad of a Type 1 diabetic, that's it.

Very thought-provoking post, as well as the responses. Having been diagnosed as an adult just a few months before my mother died (and she never really knew about it), I have never had a caregiver. Sometimes I wish I did. But I don't think of a caregiver as a Type 3 -- I really prefer the D-parent or D-spouse or even D-friend, because it acknowledges them as an integral and important part of the team without implying they have diabetes in any way. They may actually worry MORE than the PWD, but it's still not the same thing. And D-mom is a lot more descriptive that Type 3, also -- a term we CAN take out to the general public!

I can't say that I use the term Type 3 very often but I did use it at a couple occasions. I never thaugth of it this way. My son was dx a little over a year ago and sometimes I feel like I'm the one carrying the illness but after reading you I realize that I'm NOT!! I am a loving mother who is doing every thing in her power to make sure her son has the best life possible and who looks after him 24/7...but who isn't?
Thank you for helping me see all this under a new light! =0)

Didn't I see something recently where Type 3 is now a term being used by some doctors for a combo of Type 1 & Type 2? For that reason, I'm not sure about the specific term, but in reality I guess my caretakers were "My Parents"...I have always just left it at that. Yes, they helped keep me alive but first and foremost, they were Mom & Dad.

AmyR - not sure about Type 3 being used that way, but I think they sometimes use Type 1.5 to refer to PWD that have aspects of both kinds - insulin resistance AND beta cells gone bust, for example.

@AmyR - the term Type 3 was used to describe Flatbush Diabetes which presents as Type 1 but once stabilized is managed like Type 2 (ala Halle Berry).

I agree there is already enough confusion surrounding diabetes without adding it with a term only those in the loop understand. Even though I am in the trenches every day, I would never presume to know what it is like, nor equate my experience with that of my two T1D sons.

Wow... what a thought-provoking post complete with the same kind of responses. It's interesting that "we" diabetics seem to be the ones that don't mind it, and generally those "Type 3s" are the ones who don't. I concur with those who say using it out of love within the community is how I see it, and not as part of the elevator-101 pitch - for the exact reason stated as far as confusion. I like it and use it, but completely see and understand the points against it. For the record: There apparently are various sources saying an official Type 3 exists, though it ranges from "double diabetes" of both 1 &2, gestational, or something with brain cell insulin amounts and Alzheimer's. Who really knows... this Type 1 certainly doesn't. Whatever you may be dubbed, just know: You are loved and appreciated. And THAT is what it's all about.

I get it, but T3 works for me and my SO. My ex-husband wasn't a T3. He had some really great qualities, but we never connected on the diabetes and now.... My boyfriend (a term I hate as I'm nearly 40 and he's older) wants to "get it" and be there as much as he can. So when I'm writing about him in the context of my life with bigD, "T3" makes sense and he has indicated some sense of honor to have the title. It's not his only role in life (not even in my life), but it is one of them and I think he's proud of it.

I don't know that I would assign the title "T3" to someone not directly supporting me. That's for the T1 or T2 (and their supporter) to designate, I guess. (Unless I'm desperate for shorthand on a long Tweet...)

To add to the confusion (I am sorry, but again, it is meaningful for me as I fight the isolation of this disease), I am referring to my future diabetes assist dog as "T9" - a play on K9 - at least until I know its name.

@AmyR - oops, Flatbush Diabetes is actually Type 1B. Sorry for the misinformation.

Wow! What debate!!

I agree with a lot of what has already been said. I've never heard Type 3 used outside the D community. I always considered it a term of love and endearment from those living with D for those of us living with it in a different way.

Does it offend me? Absolutely not. Do I call myself a Type 3? Nope. Am I gonna run out and make a t-shirt? Nope. Would I ever use the term when talking with someone outside of this community? No.

I see it as a way those with D have reached out to those of us that don't. I appreciate that sentiment. We have too much to do to get worked up over something like this. Too much advocating. Too much educating. Too much fundraising. Too much living.

I take it as an inside joke. A little wink and a hug.

But whatever you call me, I don't ever forget that I'm not the one living with D. I'm MOM to an amazing little princess- a pumping princess- who just happens to have diabetes. And that is the only title I need!

AMEN! I really appreciate Moira stepping up and saying what I've been too afraid to say (as the PWD). I totally agree w/ Abby and Nancy. As much as I love and appreciate the support I've recieved from my mom/husband/friends and I get that they have a difficult role in the whole thing, it really ISN'T their disease. Would they take it from me for a day if they could? Absolutely. Is that an option? Not so much.

I actually read the same post Nancy was referring to and was slightly appalled. I can't imagine someone packing my lunch and counting my carbs for me. And then being ANNOYED that I chose to eat something different!!?! How often do we talk about the freedom of diabetes management nowadays and that we can make our own decisions about diet, treatment, etc. Also, I often feel like people who use the term T3 make it sound like diabetes is a burden on THEM! Doesn't lupus/asthma/cancer/epilepsy affect the lives of the patient AND their loved ones? Sure, but I don't think anyone would label themselves as having a form of that disease simply because someone they love has it!

I showed the post to my mom and husband and asked if I made them feel that way or if they otherwise ever felt like it was that much of a burden to support me as a PWD. They responded absolutely not, they had confidence in me and my decisions and felt like I could make my own calls.

In fact my mom said that growing up my Peds Endo never spoke with her, he directed all his questions at me and stressed very early on that this was MY disease to manage and I needed to be the one in the driver's seat. Did she worry? Sure. But ultimately she felt like it was in my best interest to give over my control to me while keeping a watchful eye. That's the best thing she could have done for me because I was always so independent. I burned out like everyone else but I got MYSELF through the burnouts and got back on the horse.

Label them our heroes/cheering section/support group whatever. . . because the people around us are awesome and the shoulder they give us to lean on or cry on is invaluable. But it's not their disease. So, to me, calling them "Type 3's" is just a weird distinction.

We are all in this together. No, people supporting T1's don't have diabetes, but that doesn't mean it doesn't affect them. Feelings have a right to be recognized, and it is not easy to have any part in this diabetes journey. I would question anyone who thinks living with someone who has diabetes is as hard as actually having it. And, I personally could care less if I am called a Type 3 or just a mom and wife to a Type 1. I'm too busy trying to take care of my loved ones, fundraise, and advocate to care what I'm called. We all just need to focus on finding a cure and supporting each other. As a side note, my blog on the caretaker's perspective was meant to be just that...the caretaker's perspective. It was not meant to be any sort of "guilt trip" or implication that my job as a caretaker is harder than actually having diabetes. Of course I know my husband is an adult, but everyone's feelings are valid in this journey as in all of life.

Hmmm... I was taught that T3 was gestational diabetes.

Wow!

Great post, great comments, great discussion. Very thought provoking indeed.

I am so very grateful for all that my family did (mom, dad, sister) for me and with me as I grew up with type 1, and I hold all family members of those with diabetes in very high regard. Thank you!

I agree with this post (and I have also heard Type 3 used to describe Gestational Diabetes, so that adds even more confusion). By the so-called logic of using the term Type 3, should I be a Type 2 cancer if my child has Cancer? Am I a Type 2 asthmatic because my spouse has asthma? No way would I presume to know what that's actually like. The public doesn't understand Type 1 and 2--let's not confuse the issue further.

I "had" my son's diabetes for many, many years, since he was diagnosed at age 8 weeks and obviously could do none of the needed care himself. But in no way would I consider myself type anything - at least unless/until my family history of type 2 catches up with me. He's 25 now, and of course I still worry; that's a mother's job. But I worry about all my kids: parenthood is a lifetime sentence without the chance of parole. I think it would be very presumptuous, at best, to claim his diabetes is in any way also mine.

I've never really given this much thought. I think really...in the grand scheme of things...does this really even matter?

I get that my child never gets a break from type 1. I know it. I live it. I am his pancreas right now. I don't take anything away from him...ever...in the ownership of being the person with it.

I honestly think it was just a person's way of describing or labeling the caretaker or loved one of a PWD. I don't think it is a big deal, at all.

Call me what you will...just don't call me late for dinner.

My husband has no problem with the term T 3. He appreciates that I know how involved he is in my care. It's a term of endearment in our household. He may not have the disease in his own body but when "the two became one" He became a T 3.

Well written post but I disagree.

I had never heard the term Type 3 Diabetes until I read this blog entry. So it has not been on my radar, nor do I know how the term was coined nor why. So there's all my caveats.

I would never refer to myself as type 3 diabetic, I don't have diabetes of any type, I only care for a small child with type 1 diabetes. He is my hero, he is the one who has to deal with this 24x7, he is the one who will always have to think about how it impacts his life. I can take a break, at least from the continual impact, even if only for a few hours or if on a trip out of town maybe a little longer. He can't do that. It will always go with him wherever he goes.

I think it sounds self-serving and would only cause confusion around a disease that is already confusing enough.

So as I said, the term had not been on my radar as I had not heard it before, and having heard it now I plan on keeping it off my radar.

Moira said a lot of great things and THANK YOU to all of those who are the supporters, caregivers, helpers, reminders or T3's whatever you want to call yourself. I just recently came across this "name" and i do not use it in public or off of my blog but i explained to my husband what it means to me, and in the house randomly, i'd say something like, "thank you my t3 pancreas!) or something silly. My dear husband IS that person that worries about me when i'm not with him, worries if i'll be able to work with my clients and be low and high, and how i might feel. When he's with me, i feel bad because he is the sole person who has to deal with my moods, my highs, my lows, my refusing to eat, or mad cleaning when i'm low and am getting irritated food isn't made yet. By telling him sometimes, he's my T3, it's saying, thank you for dealing with all of those things related to my T1, that i can't control, and for understanding, yes, i can't take a day off, but you poor thing can't either when you're with me. I do agree it's not something to use in public as people already don't understand the difference, or look at you and say well you don't look like your sick or T1. Then i ALWAYS get, well your old. DUH, kids grow up too.. hello. (even though i was older when i got diagnosed.) Either way, there should be more days than mothers day and fathers day to thank those special people that are in the lives of people with T1.

Very persuasive argument and I agree. I also appreciate the reminder of where the focus truly belongs since I too am feeling burned out. Occasionally a rare headache or bout of nausea provide a glimpse of some of what my son goes through. Emotionally and psychologically, I'm not sure I'll ever truly get it.

What a great discussion. I have used the term “type 3” when describing myself to my SO, who happens to be a “type 1”. I never dreamed it would be offensive to anyone, and if it is, I apologize. I read in this discussion that other diseases do not have labels. I can say from experience that living with a Celiac, an epileptic, a borderline personality disorder, and a type 1, the type 1 wins for consuming the relationship. It is the only disease I have lived with that is directly impacted by, and directly impacts the things we do, the things we eat, and the way we live, constantly. I read the story of a wife packing her husband lunch, and, well, you know the rest. My heart went out to her. Most type 1’s won’t understand how hard it is to watch someone we love so deeply struggle, fade, lose control, go low, go high, get mad, get sad, give up, and not be able to help. So we do help, we try to buy the best food, we count carbs, we pack lunches, we make appointments, we buy meds. We are never really away from the disease either. My SO has macular degeneration, and cannot find the little pink lid from the needle most of the time. So no, I don’t take the shots, but I pick up the fallen alcohol pads, and clean up the blood spatter, find the little pink needle cover, oh and the test strip that never quite makes it into the trash. With that, I actually take more time than he does taking the shot.
I am a mom of a beautiful daughter that suffers from Borderline Personality disorder, I am a daughter of a cranky Celiac, I am a Significant Other to a type 1 diabetic. I love them all, and do the best I can to help them with their struggles.
I am thankful for the insight I have gained from reading this blog and others out there.

I have to agree with Moira. I used to understand and agree with that term "T3", just like the "dmama" one, until now. I no longer agree with calling the caretakers of diabetics a Type3 diabetic because they aren't diabetic. They don't walk in our shoes every day because they can't wear them. Only we can. Just like "dmama" - A mom of a diabetic supposedly, taking the word apart in etymology, it would mean a diabetic mother... and these mothers do not have diabetes (unless, of course, they do as well as the child).
I mean, what would be the harm in just coining them as CPWD - Caretakers of People with Diabetes. That would include what we now know as dmama's and T3's.
Of course, this is just me rambling. I could totally be missing the point. Just thought I'd throw those out there.

An interesting topic and even more interesting debate! As an adult with type 1 who is also the parent of a child with type 1, so I thought I would add my perspective (that and I'm just hyper-opinionated).

I understand both sides of the argument, but I fully support the use of the title "Type 3." To the author's point that parents and caregivers can "get away," my rebuttal would be that it's only because they spent 6 months training someone to cover them for a few hours (or even for that rare and blessed event for a T3 person, the "overnight stay.")Plus, being physically separated from a child with diabetes is far removed from taking a break. As an example, Google the term "Type 1 diabetes and school nurse" sometime and one quickly learns that being away is not a break.

In fact, as a person with T1, I would argue that much of the time it's HARDER to be T3 than T1. When my BG is high, I know it. When it's low, I know it. When I have a stomach bug and ketones I know that I really have to drink that Sprite so I can give insulin to clear the ketones. Emma knows none of these things yet, and it's never off our minds no matter how far away we are.

My wife lost her father to T1, and now has a husband and child with type 1. She's a relentless advocate for Emma and children with diabetes. Over the last 6 years, she's spent more hours in the night awake than asleep. She dedicates herself fully to Emma's care so that Emma can "get away" from diabetes herself as much as it can be done. She's a fabulous mom to our non-d son, and an incredibly talented businesswoman. And even after a sleepless night followed by a day full of calls from the school nurse who still doesn't get it, she still makes a point to freshen up her makeup before I come home from work.

As far as I'm concerned, granting caregivers the title "Type 3" is probably the least we can do.

I have never heard of type 3, but it seems like a term of endearment to the loved ones who support PWD.I am the diabetic in my family and I do everything in my power to take good care of myself. It is never ending, but after doing it for 30 years, and having and raising 3 children at the same time... it is simply automatic after a while. There are times when I want a holiday, and that is when I lean on my better half and he brings me my tester, or juice box or whatever I need at the time... after a while you just get over it and carry on. Having D is a very good reason to live well, and enjoy the benefits of taking good care of your self and don't dwell too long on self pity, or being too needy. Different though for parents of diabetic kids. I think that would be very difficult. Happy Easter, and try not to eat too much chocolate!

Nick, hear hear!

I am also type 1 and more recently father to a T1. I'm also the wayward husband who ate the chips after my wife packed and labeled my carb counted lunch. She didn't pack it because it's her job or my expectation. I usually pack my own lunch, thank you.  She did it because she cares and I know that and she was trying to give me a break from my D and share the burden. In school together we were wisely advised that sometimes the most you can do for someone is help them carry the load for a bit, knowing you can't take it for them completely. That's what she was doing. Only I had been in denial or burnout or noncompliance or whatever label may inadequately apply, and I didn't realize it, and had gotten so used to the load that I ignored it and kind of didn't notice it anymore.  I felt like one of the commenters did--what's the big deal? I'm an adult. I can make my own choices. But then I thought a little harder, and smarter, and healthier. My wife doesn't often get frustrated with me, so I examined my choice to essentially invalidate the effort she put into counting my carbs and helping me shoulder the load.  And you know what? She was and is right. That helped break my denial-burnout-non-compliance cycle, which had actually stretched to several years by then. I thank her all the time, though unfortunately not often enough out loud, for letting me know she was frustrated and thereby showing me that my PATTERN of behavior was all wrong--that's quite different than taking a RARE D holiday.  She doesn't want D in her life any more than the rest of us do, but she'll willingly and lovingly expend every last ounce of her energy to get me back on track when I NEED it, or to help prepare our T1 daughter for an eventually independent life. I've  never met anyone else who "gets it" so well--it's one thing to give your kid shots, to change to a pump, crunch the numbers and adjust basal rates and ratios, then redo it all when the math makes perfect sense but the body reminds us it's not a test tube and doesn't care for our math all the time. It's another thing completely to have the vision to realize that all of that is only half the battle if you don't also prepare your child to be able to do the same for herself someday, and to have the skill and control needed to include her without pushing her too hard, but also without spoon-feeding her so much that she'll be helpless later.  This honorable and amazingly selfless woman doesn't do it for accolades or recognition. But she certainly doesn't deserve to be punished any more than this D disease already does to us all--no matter what you call us.

When my daughter was diagnosed she quickly became my hero. No one else with diabetes has ever inspired me as much as she has. But before long I realized yet another of the many reasons that my wife is my hero too, inspiring me more than anyone without diabetes has ever done, not only regarding my own diabetes, but even moreso my parenthood and the tremendously greater parental responsibility I have now, but don't want, and can't escape, and do accept. Thank you, Tamara, for helping us carry the weight as often and as far as you do. I'm glad I can help you carry yours at times as well. 

I am not a fan of the word "winey" to start with. Unless you are describing a toddler’s behavior, speaking to adults the term is a little confrontational. I have read a post in the past by this guest and was very inspired by her words. This time...mean comes to mind. I don't think she would have been able to say all she had to say (in this post) if she was in the thick of it still. Type 3 isn't going to get picked up by mainstream media (I'd put money on it) and I think the term is giving the caretakers and family members who do directly care for Type 1's a bit of credit and love for their efforts. I think to be fair Mora is trying to put a little perspective back in the reality of Type 1 and who actually bears the ultimate burden…point made. It would be equally fair to remember that it takes MANY years for a parent or caregiver to deal with and digest a Type 1 diagnosis in their child/family member as well. It is all consuming at times because it is a serious condition that allows for little error once determined. Just saying it ain’t so does not make it not so…cheerleaders don’t determine the score in the game, the players do and simply telling people who spend their days and nights taking hits: no sleep, financial strains, emotional disappointment, extreme fear, etc. to suck it up and remember they don’t have it. Well, it’s a little mean and quite frankly insensitive.

One of the really great things about SUM -- and Kerri's hard work that was put into it -- is the amazing back and forth that comes after her posts. I loved reading ALL of these. I also hope I didn't come off like 1) I don't really care about my daughter. When I say "time off" I certainly don't mean i FORGET about her. But come on, two weeks of her at diabetes camp always really WAS a "diabetes vacation" for me. Thank God for Clara Barton Camp and 2) That I don't think caregivers deserve a name. Heck, I think they deserve a medal of honor! Excellent, thoughtful and as-always, tear-inducing chatter. I heart SUM and the DOC.

This is an interesting discussion. I can agree completely with someone hearing the term for the first time and thinking it odd or even inappropriate. To me, however, I have always seen the reference of T3 as something completely out of respect to those who do live with diabetes - to distinguish the caregivers as caregivers, people who are very different and indeed are not living the same day to day experience as those with diabetes.

I have never, nor have I ever heard of anyone saying anything like: "I have T3 diabetes." Or "I am a type 3 diabetic". I agree that is a misrepresentation. As a parent of someone living with type one diabetes, however, I find the need to identify who I am in things like focus groups or the like when diabetes is the point of the discussion. In those cases I will identify myself as the mother of a child living with diabetes. It's important to know the context of your company. I find the same holds true online. There have been several instances where people have thought that I am living with diabetes. Specifically, when on twitter, it's a lot easier to identify caregivers as T3s. To me it's just a shorter way of saying, "I am the caregiver of someone living with type 1 diabetes". I feel it's a sign of respect - I do not live with diabetes and feel I need to make that distinction. I won't ever pretend that I know what it's like to do anything other than care for someone with diabetes.

Excellent post! Agree with all you wrote. There is no such thing as T3. I am grateful for the support of my family and friends but … just like I'll never know what childbirth is like, my wife will never know what BEING a person with diabetes is like.

Sean,

I so hope there was no offense taken by my referencing your wife's blog above. I hesitated over including it because I couldn't remember quite where it came from and didn't want to cause offense or uproar, but decided to anyway because I feel like, even with all the love she meant it with, to me, it's going a little far. That might just be me - it upset me several years ago after giving birth when the person delivering my breakfast told me she wasn't "allowed" to give me more creamer for my coffee, as it wasn't on the "diabetic" diet. Grrr.

I'm glad to know that she was there to help when you needed and jump-started you back to better care, though. That was part of my point, as well. The Type 1 should want to take care of themselves as best as he/she can because of love for the non-D partner as much as anything.

I was also looking at the situation in comparison to that of my own husband and I. While I wish sometimes he was more actively interested in aspects of diabetes OTHER than "are you low?" I don't want him to have to take charge of my care and my choices. In our relationship, I'm the lunch-fixer for him, I cook dinner, I grocery-shop, I pick up meds, I'm the one that might mention to him that maybe he should have a glass of water instead of Dr. Pepper and I'm the one with diabetes. If he decides not to eat the lunch I packed for him, that's his choice, and if the roles were reversed, I would expect the same from him. We should be helping each other to be healthy and not just focusing on the individual with an official diagnosis.

Hmmm... I thought I'd added my name to the comment above... sorry.

I like "type 3". It's easy, so it gets points for that, but as was already said, it's better than "caregiver". While my husband does give care, mostly when I'm low, I don't think caregiver is accurate term for a spouse as much as a parent, which is a caregiver, diabetes or not. "Caregiver" implies a disparate relationship, and my husband and I are partners. Type 3 most uniquely and succinctly describes his relationship to diabetes.

I'll keep using type 3. If people don't like it, so be it. I don't try to be rude, but I don't have the patience to tiptoe around being PC in an effort to offend no one. I also say "diabetic", which some people find offensive, but I think it's a great word, and I'm proud to call myself one.

Oh, and my husband has referred to himself as a type 3 in the context of discussing hanging out with me and a bunch of diabetics. He seemed quite pleased with himself for knowing the lingo :)

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