Is Managing D Intimate and Personal?

Managing D is a VERY intimate act for us” said a T1D in a previous forum.

“If you do not mind elaborating on this I would be curious. Do people see managing diabetes as something very intimate? How so? I know that there are many people that test and inject in public. What makes a person feel it is intimate and another not? Is it the fact of being a diabetic or is it just personality?” was a previous response.

This discussion was taking place in the middle of another discusssion. I thought it needed more people to notice it and address it. Please express your thoughts so that we can be better understood by D educators and practitioners.


It is very intimate in the way that many Ds don’t want other people, especially strangers, to know that they’re “broken”. I know it took me years and years before I had the nerve to inject in public. It’s embarrassing because you know that people are noticing and watching, curious. It’s humbling because of all of this attention. It’s scary because of all of the attention. Now all of those people know that there’s something “wrong” with you- but they don’t even know you.

Many people look at sickness as “weakness”. They’ll see me and feel sorry for my disease, when all I want is for them to look at ME and see ME- how I act, how strong I am, how confident I portray myself, how “classy” I act… just ME, not my stupid disease that I HAPPENED to get.

The people who are on these forums (or other discussion groups), we are the smart ones. We are seeking information, sharing experiences, and trying to learn and to understand. However, many people are like “mules”. They just go with what everyone else thinks. They see someone inject in public- “Oh, they must be ill.” or “I wonder what’s wrong with them?” or “Eeesh, that makes me uncomfortable, can’t she go into the bathroom?”

I’ve experienced all of these reactions.

T1D is also very intimate, because most people believe that my health is my own responsibility. It is, but let me get to another point. There are many many many things that affect BG levels: overdosing (duh), stress, exercise, flu, the weather? But, when something goes wrong, and I go into the hospital, so many people blame ME for what happened.

I remember a time when my sister accused me of going to the ER for “attention”. I laughed. Yeah, that sounds like a fun idea. I love getting prodded by doctors, my boob slipping out of my nightgown while I’m lying semi conscious on the stretcher, drool coming out of the side of my mouth in front of strangers, having a seizure so strong that I ached for days after, my fiance’s dad seeing me in my underwear… yeah, good times, good times. Having absolutely NO CONTROL of my body does NOT seem like a risk that I want to take for “attention”.

But, people without D just DONT UNDERSTAND. Which makes me feel like I really am alone in this disease. No matter how many times, or how many ways I explain it, they just don’t get it. And they never will. I can’t blame them for this.

So, yes. Taking injections is personal. Managing diabetes is personal. And me adding anyone to my circle of T1D world is a very intimate and special choice. I choose very carefully because I don’t want a “mother”, I just want someone to listen to me talk sometimes. Many people don’t know how to just listen.

Good question. I don’t hide my D and test/inject in public and have no problem answering general questions about it. But I do feel that the details of my daily management and numbers are very private, personal things. I can’t really explain why. Maybe it’s because non diabetics wouldn’t get it anyway.

I really don’t mind if people know that I’m diabetic or if they see me injecting/testing. Is a matter of personal feeling.

Well when I was a kid I was very embarrassed by it! I remember being in 3rd grade and having to bring a snack to school and have to eat while class was going on. I felt ashamed and like the other kids looked down on me for being able to eat something when they couldn’t. I would often not even eat the snack because I didn’t want any attention or to feel different. As I got into middle school and high school I’m not quite sure how I managed to get through without problems because I never tested all day at school and never had snacks so I wouldn’t stand out even though most people knew I was diabetic. I was also active in team sports. I based things on how I felt most of the time instead of just doing blood tests which scares me to think about now. But I think it could also be a part of my personality because I am normally a pretty shy person in general. I think now I have become more open about it especially since being on a pump the last few years. Just recently I had bolused before a meal and our waitress was talking to us and she stopped what she was saying and had a strange look on her face looking around as if she saw a ghost as my pump was beeping. I laughed and said it’s okay its just my insulin pump. She laughed and said oh I couldn’t figure out where that noise was coming from. But for me, yes it’s been a matter of feeling different or like having people know that there is something “wrong” with me that has been why I have hidden it from people who aren’t close friends or family at least in the past. Now I don’t really care so much if people know and welcome questions and are happy to educate people who don’t really understand D’s. But it’s taken many years for me to get to that point!

I think it’s very intimate, but that has nothing to do with feelings of brokenness. I’ve never seen myself that way. What is intimate to me is the very personal relationship one develops with one’s body and its minor changes. We experience our bodies in a different way than non-diabetics, I think, having to be aware of subtle fluctuations, reactions to certain foods, etc. I have an intimate relationship with my diabetes in that I know it so well. I’ve lived with it 19 years. It is in the bedroom with me, at the doctor’s office with me, it’s something one has to control at such a minute level that I think intimate is an appropriate term.

I am quite public with my diabetes actions and with the fact that I’m diabetic or having a low or whatever. But none of those onlookers are seeing my management, per se. If someone sees me bolusing or testing in public, they are observing actions that are involved in its management, but they are not in my mind listening to my struggle with how much to eat, how long to extend how much of my bolus, thinking of my insulin on board, considering whether I want to be up all night checking my blood sugar. They do not follow me home and wake up with me every hour to nurse down a poorly anticipated high. They are not at the doctor with me discussing the potential complications.

Take another condition. I’ll pick one I have and understand well, so as not to offend. I have recurring kidney stones. It’s a serious condition, but its management does not require that level of micromanagement or intimacy. I know there are certain things in my diet I should consume with moderation. The end. Good control of my T1 Diabetes, on the other hand, is a 24/7 constant personal dialogue for me. Can’t that be considered intimate?

I don’t think the quote was meaning to imply hiding one’s diabetes.

I don’t consider managing my D as intimate and personal. While it is something I have to consider 24/7 it is really just a fact of my life and something I need to manage and control or else I’ll suffer conseqences. I test in public and openly but only because I have to test no matter where I am. I don’t inject because I have a pump, so I pump in public and openly. When I was on MDI I did that in public as well. I don’t consider myself sick or having something wrong with me - and don’t want anyone else to either! My educators and practioners jobs are to support, treat, and educate me in available managment techniques and tools and to provide appropriate rx’s and tests when necessary. I most certainly hope they understand my disease and keep up with the industry if they intend to keep me as a patient.

Here’s what I said in the other thread… pretty much sums it up for me

it is intimate in the fact that it is so personalized, the consequences of not doing properly are so severe. I have no problems testing or injecting in public, I am very open with the fact that I am diabetic. The more people who know I am diabetic, the better off I’ll be when I screw something up. I’m happy to talk with anyone who has question and wants to learn a little about it. Intimate doesn’t equal private to me.

The most intimate thing is that I and only I are responsible for making sure it gets done right. Doctors are advisers, nothing more. I am responsible to make sure I am educated enough to take that advice and use it to my best advantage. Any change I make to my treatment is a very personal decision that will effect my future. That makes it intimate

i’m not liking this word “intimate.” As if it was some lover or something (har har) Personal is a better word for me. I don’t hide my disease, nor do i really consider who’s around to see, and i’ll explain myself if i have to. I don’t mind telling you how much it sucks or how my day is going. The only time i really hide anything from other people is when i’m not being a good diabetic, then i’m pretty quiet and my previous rants about how hard i’m working don’t come up anymore. (or you’ll hear more negative rants then more quietness) it’s kinda hard to explain to somebody why your not taking care of yourselves… i wish it was a simple as a+b= great results, but it’s not and it’s difficult to explain that to somebody. I don’t know why it’s so hard, because non diabetics give up on diets and taking care of themselves all the time. But when it comes to the Big D i would say it affects and takes over everything in my life, but just the same everything in my life affects and demands attention from my diabetes. I think we all have our limits in how much we want the outside world to know what’s going on with us inside, be it diabetes or other personal stuff.

(I’m going to re-post my response to that question from the other thread :slight_smile: )

I think that everyone has a different idea of the way that the word “intimate” relates to their diabetes experience. I don’t think that Marps was implying that type two is less intimate, really. :slight_smile: Or that the diseases you listed are somehow not intimate. Rather, I think a chronic illness is something that lends itself to being a personal affair because you are the only person on the face of the earth who knows what it is like for you. In that sense all illness is personal - intimate even. You doctors and even your loved ones do not get a backstage pass to the rollercoaster of emotions and feelings that go along with dealing with diabetes.

It is intimate, to me, because it is something that I have to deal with on an every day basis. The disease itself is not something you can see and it is often not something I can quantify with words. It is something that is constantly brewing in the back of my head - blood sugar numbers, bolus, basal, carbohydrate counts, funny feelings, testing, logging. All these things happen under the surface for me 24/7 and thus feel like…they’re personal… if that makes any sense.

I can’t say that I hide the fact that I’m diabetic in terms of letting people know, but I do test and inject privately for the most part. I’m more comfortable that way.

I do feel, though, that it is an invasion of my privacy when people inquire about my blood sugar number or sneak a look at my log book or glucometer. I realize it is out of concern if I’m low, but I feel it is an invasion of my privacy, anyway.

eeesh. Thanks for posting this. I didn’t even know that there was a response to my previous post. To think that an “attack” was launched from a completely personal expression is unfathomable.
I didn’t even say anything about other diseases. It was completely a reflection of myself.


Oh. Haha. Hi. I didn’t edit my response did I? Whoops! Just so my comment makes sense to people who are coming here without reading all that stuff first: in the other thread the poster we were responding to listed off a bunch of other diseases and asked if they were not as intimate as T1. I was responding directly to that one.

I think that the management of a chronic illness is a personal experience for everyone, as everyone reacts to situations differently. It’s not like there is a default reaction guide for type one diabetes. :slight_smile:

I agree with this 100%. I know I internalize a lot and keep to myself to avoid the things I don’t like from other people - rationally I know they mean well, it just gets old to feel like I’m either constantly correcting people’s ignorance, or being polite while they go on and on about the latest fad cure they’ve heard of. No one knows how to take care of myself better than me, and really it isn’t anyone’s business other than mine about how I do that.

That said, I don’t generally hide my testing/injecting in public (though I do shy away from being so “open” with some of my own family - ironic, no?), but I also don’t like it to be the topic of discussion either. I try to live a fairly normal life, and I appreciate being treated as if I do, not as if I’m special or something is “wrong” with me, or that every thing I do has to be scrutinized.

I believe intimate is a good word for how I feel. I am protective if someone asks about my diabetes. Much like an early stage of a romance. Anytime you are attached to something as we are it is intimate, from placement of shots or infusion sets, to the longing for the return of good numbers. It is more than personal for me. Intimacy can make you hurt or feel great easier than almost anything else. I feel as if I get to live with my killer, as it will most likely be. How is that not intimate? Some days I hate it, others, I ignore it, and still others it is a close friend I have known for oh so long.

Very poetic.

honestly, i don’t like to test in public. and… i don’t even like people to see me holding my omnipod PDM. i don’t know why. but… i don’t. even my family. i test and everything in front of them. but, i hate it when anyone in my family says mentions anything like “where’s your pod, today?” or anything like that. even when my dad says “diabetes”, it bugs me. why? i have no clue. i think… that in my mind, i’m perfectly normal, still. so, when i hear other people acknowledging it… it scares me.

I appreciate your interest as an endocrinologist in our thoughts and feelings as diabetics… I’m wondering if you will be quoting any of us specifically in your journal article(s), or if at this point you are gathering a general understanding of how we as people relate to the disease?

Well in my perspective i would make it intimate because of how i was. I was very close to other people, didnt have too many friends and i didnt talk about my diabetes because of how people would react to it. Now i dont care if some old ladies are watching me and criticize me.

When I read the comment in the previous discussion I questioned my intelligence and thinking process and I still do .I am a simple thinker and thank goodness totally aware of what I need to do to manage MY diabetes 24/7 for the last 26 plus years.I was brought up in a time, where we did not discuss one’s ailment …The word cancer was very softly spoken , same with diabetes or lung disease. Then I moved to North America in the early sixties and always have been open about my feelings, desires, and managing my chronic illnesses etc. What turned it around ?? I don’t really know.
I think , that I would not have offered my help as an advocate for people with diabetes with the Canadian Diabetes Association , if this were not the case.