Diabetes and identity

I’m curious: to what degree is your identity / sense of self (whatever you want to call it) connected to your diabetes?

I’ve had T1 for 23 years, and for most of that time I haven’t really thought of myself as a “diabetic” — or even a “person with diabetes”. I’ve always been conscientious about doing the things I need to do to look after my diabetes, but those routines were no more connected to my sense of who I am than, say, brushing my teeth. The exceptions would be those inevitable episodes of feeling hopelessly out of control — at which point I’d just feel like a sick person.

Until recently, I’d had no connections with other people with diabetes, I rarely made a point of mentioning my diabetes to others unless it was necessary, and sometimes I’d have the weird experience of “remembering” that I’m diabetic — ie. different from my friends/family/colleagues in a fairly important way.

Then, last year, for the first time, I met someone else with Type 1 and had the equally weird experience of talking about diabetes-related stuff with someone who really understood and connecting with that part of myself in a more conscious way. That experience led to my participating in Diabetes Training Camp last summer — an even more intense version of the same thing.

BUT, wonderful as that week at camp was, by the last day, I was tired of being Heather the Diabetic and just wanted to go back to my “normal,” “non-diabetic” life. Obviously the feeling didn’t stick, or not completely — I’m here on this (very wonderfully supportive) site; I’m raising money for the Canadian Diabetes Association; I’d like to connect with other PWDs in Vancouver. But I do find myself in an ongoing attraction/repulsion sort of relationship with the idea “being diabetic” in more than just the practical sense.

Anyone else out there have any thoughts on the matter? I’m guessing that those who spent their childhood and/or adolescence with diabetes might have different experiences from mine? (I was 21 at diagnosis.)

I am always hungry, so am always thinking of my D. =) My husband and I laugh about it. When do we eat again? What are we doing for lunch? Dinner?

Type 1. Dx at 23, have had it 8 years. I don’t tell people I am diabetic unless I need to test or take a bolus. I have D. I am D. I am not the D. I am me.

I’ve always been “out there” about having diabetes because educating others—and being educated in return—has been a great coping mechanism for me. When I took a job editing a magazine about diabetes I was a little worried about being surrounded by the disease 24/7 in personal life and work life. But so far, so good.

I do think that having diabetes since age 4 makes it easier and more natural for me to strongly align with this characteristic—I can’t remember a time without diabetes, so it is very much part of my self identity.

But I also enjoy a lot of things in life in which diabetes does not come into play. For example, when I garden, I don’t think of myself as a gardener with diabetes. When I read (and write, but I’m only on chapter 5) mystery novels, I don’t think of myself as a reader (or writer) with diabetes—but I do cheer if the author is spot on in describing diabetes or the main character has it (hooray for Kurt Wallander). I don’t think of myself as a mom with diabetes—until diabetes adds a degree of difficulty (yes, it’s OK to eat a kid’s Easter candy when that’s the only sugar handy to treat a low glucose episode … and when I need a battery for my pump why has someone ALWAYS used the last AA for the Wii remote?!). Do I volunteer that I have diabetes when interviewing for a job? No (all they have to do is Google me now).

Diabetes is rarely the first characteristic I use to describe myself. But it’s in the top 10.

I’ve had Type 1 diabetes since I was 11, and am now 28. I kind of had the opposite experience as you with regards to meeting others with diabetes. Diabetes for me, was always something that set me apart from my friends, made me different at school, etc. It might have been because I was diagnosed as a pre-teen/early adolescent when what other people think of you seems to really matter. I hated having to eat a snack at school when no one else was eating, or take a shot when no one else was, etc. I really didn’t like all the attention. Then, I went to diabetes camp one summer, where the focus was so much less on “diabetes” and more on just being a kid. All of the sudden I wasn’t the weird one, and I could just relax and enjoy normal kid things without worrying about what other people thought when I was taking a shot, etc. Meeting other Type 1’s like me, and spending time at camp actually helped me to let go of my “Erin=diabetic” view, and embrace the view that diabetes is just part of my life, and does not completely control my identity.

Now, I am much more like another commenter said, diabetes is just one of the things I would use to describe myself, probably in the top 10, but definitely not in the first place.

Hi, Kelly … Hey, another writer! :slight_smile: Whaddaya mean “only on chapter 5”? That’s great! It’s taken me a lot of characters and a couple of books to (finally) come around to the idea of incorporating diabetes into my fiction. The idea never occurred to me before, but, if it had, I probably would have shied away, for fear of being thought of as “diabetic writer.” I’m not particularly worried about that anymore.

And I’m finally discovering that, yeah, being “out there” can indeed be a great coping mechanism! I shall now go snoop your profile and find out what magazine you edit. :slight_smile:

Wow … that is very interesting, the difference in our camp experiences! (and early diabetes experiences … so much different coming to it as a kid) … but what you describe makes complete sense to me, ie. being able to let go of the “self=diabetic” identity.

Hi, my name is Donna. I am tall, thin, have blue eyes, brown hair and type 1 diabetes. It is part of who I am. Diabetes doesn’t define me, but it gives me opportunity (as a diabetes educator) to really understand and offer tips, information and help to others with diabetes. My height, blue eyes or brown hair doesn’t seem to help anyone.

I thonk so! I’ve never given much thought about being a diabetic seeing that I was 10 when I took it., but always knew it was there! I mean the shots, diet, and exercise seems to have always been a part of my life now for 36 years. I don’t know that myself worth is in betig a Type 1 but I have always in the back of my mind knew it was there.

i am diabetic, hear me roar!

David was diagnosed at age 10, two months shy of his 11th birthday. Diabetes took away a fair amount of freedom at that age, but diabetes has also afforded David with a maturity level 6 1/2 years later, that is well beyond his peers. So it is somewhat of a give and take relationship. D does not define him, he is his own personand he has a great sense of humour, while having become an extraordinarily responsible 17 year old.

David had a passion for hockey, pre diagnosis. Upon diagnosis my husband was totally blown away and even before the week of education, my husband was shaking his head, saying it is such a shame that David will not be able to continue to compete in hockey at the level that he was currently competing. My husband is very, very, sports oriented, even though hockey was never a sport of personal interest to him. It just happens to be the sport that our son is in love with, a very Canadian or American, winter sport. On hearing my husband’s comments, I told him straight out that whether or not David can keep up, or excel, is up to David. Don’t you dare tell him that he can not do it. Let him figure out his limits, on his own. My husband listened and let David work through all of this himself. With David’s love for hockey, he quickly figured out how to manage his diabetes with competitive sports and continued to move himself up in competitive levels, including playing some games this year as an underage, junior team affiliate.

Hockey is one of the sports where David actually takes his pump off while he plays and on one occassion he did remark that it is his time, his few hours, to be feel free of diabetes. It has not been a simple ride. David has had to decline opportunities such as competing in a skills contest between tournament games, knowing that he needs to eat, if he plans to hold up well throughout the second game. He had to leave a tournament weekend where he seemed to be coming down with something as we were getting nothing but HI readings while double dosing insulin over an extended period of time. He has been frustrated, particularly that one tournament weekened, and yet I have never heard him say, why me?

David just started learning how to drive. He could have gone for his learners permit when he turned 16 and I gave him the book to study for the knowledge test. But he did not ask to move on and I waited until he did. So a few months south of his 17th BD, he wrote the test. Tossed his head afterward, saying why did I not do that last year… but maybe was a bit worried after hearing his older sisters rendition of her knowledge test. She was so anxious, worried, whatever… that she threw up in the garbage can outside of the exam… failed… and then re-wrote an hour later and to pass. We have headed in to that TOTAL independent of Mom/Dad realm and I won’t worry about how he will handle the last couple of years of high school, then college or university, as he has already handled so much more, like a champ!

Connect where you feel comfortable. I can imagine by your photo that you have experienced a lot of challenges similar to our son and can very likely be an inspiration to alot of PWD or non PWD’s. Enjoy life… each and every day.


I live with diabetes, its a part of who I am, but it doesn’t define me. I was diagnosed in 1996 at the age of 28. Since then, I’ve had 3 children who are all diabetes free.

I have D. I am D. I am not the D. I am me. That is a great quote…says so much with so little…Nicely put!

My story and identity , simple and short : : …am a Diabetes Champion and have been acknowledged a such …diagnosed at age 42 plus , stayed connected with the CDA since ,met lots of PWD , have learned a lot and have been able to contribute and share and LEARN ; like to continue at age almost 70 …associates, friends, family …aware I have diabetes …they may not totally understand , what we have to do to manage our chronic disease …I promise to give them opportunities to learn .As a retiree this is my hobby and focus :" Mission Diabetes " . Please visit my page to learn more about me .
Great post !!

Thanks for sharing David’s story, and for your encouragement, Cheryl! It’ll be an interesting time for you, these next few years of having David move into full independence. My parents were supportive when I was diagnosed — I was still living with them — but there was sort of a tacit agreement that, at 21, I would take everything on myself. I’ve never really talked to them about it … it must have been hard.

You’re a chronic inspiration, Nel! Keep it up! :slight_smile:

My main character is a retired police offer with type 2!

You forgot to list excellent comedic timing!

I look forward to reading it! I’ve got two 1s and a 2. :slight_smile: