I do a lot of good in regards to my Diabetes management. I eat a decent
diet, exercise a little every day, take my medications when needed and
keep a semi-positive attitude. With that being said, I might have one
area I lack in… Sharing my Diabetes.
I’ve always treated Diabetes as my problem. Danny (me) was diagnosed (at a young age)
with it, I will be the one to handle it…this is a good thing, right?
A few months ago my wife & I were talking and she brought up the fact
that I never share any Diabetic related feelings (day to day stuff) with her. I guess this is the way I am, I keep very
quite about almost everything in regards to my Diabetes, especially the
mild complications I deal with.
Recently, I’ve began using a CgM, I’ve left it on the table or bed a few times and
my wife will pick it up and say “Hey, your blood sugar is 72 mg/dl, going a little
little low, eh?” or “Your blood sugar is 104 mg/dl looking good right
now Danny.” I know she means well/ she cares a lot about me, but it’s SO odd for me because I have NEVER EVER shared my readings with anyone.
Here is my question, Diabetes has affected me in every way possible
(good and bad)… why would I bring another person (my wife or anyone) into the ups and downs of the disease? I know she is my wife and everything must be shared… but my Diabetes is really tough for me to “share” with anyone, period.
The font structure/layout of this discussion is so odd, my apologies, I have no control over it.
I have trouble sharing because to non diabetics it is just a number, but to us…
I then become frustrated when they don’t understand how I feel and what it is like to do this 24/7, so yes I hide as well.
Danny, such a tough place. On the one hand I think it is important for me to share my troubles because I think it makes my husband feel like he can “fix” some things for me. Granted, in truth he can’t, but he often feels helpless that he can’t take the hurt away… and anything he can do to feel like he is helping, makes him feel better. So… I partly share my concerns as a way to …take away his concerns. Does that make sense?
On the other hand, nothing is more frustrating when he can’t do something to help, but he wants to try, and then I feel encroached upon. So it’s a double edged sword.
I started out keeping my treatment and numbers and feelings about diabetes to myself. But my husband had much of the same reaction it seems your wife may be having. I think my husband wanted to know that I could trust him with my emotions. It really came down to him wanting to feel connected to me, and since Diabetes is a huge part of my life, he felt I was keeping a portion of myself locked away. Do I think he really wanted to know every blood sugar or what I ate, no. But he wanted to be part of what was so big in my life. I couldn’t deny him that piece of myself because my emotions and reactions to my diabetes affects other areas of my life that he is involved in.
Do I have days I regret bringing him into my “inner circle”? Absolutely… but in the long run it made us more secure and our trust is unwavering. Do I think you should do the same? I can’t say. I think the most important part is keeping your communication open. You may not want to tell her things, but as long as she knows it’s not because you don’t trust her or care for her, I think it can work out.
Good luck, it’s a really tough spot to be in.
I am very open about mine, I do not try to hide it in any way. It is part of me.
My husband is very supportive. Even went through pump training with me so he can if needed/wanted do set insertions etc.
Is is very good to ask if my numbers are ok, ask me if I have eaten, remind me to eat when he knows I have not—keeps hard candies in his pocket for me when we re out and offers them if he thinks I might be in need…I couldn’t imagine trying to keep him out of such a big part of my life.
Wow - good topic. My hubby has always been very acceptable with what I do, has been freaked out a few times when I have a bad low, and I’m the one consoling him that I’m going to be okay, as I stuff food into me, and become a semi-animal as I try to control my emotions. I love him for putting up with me when I’m this way and the fact that we’ve been doing many things over the years that most people would only be able to do when they retire. He said he wants me to experience everything, incase something happens, maybe not due to diabetes, but the “whatever”.
All I know is that I’ve always been like yourself where it’s my problem (is that bad to say that about diabetes???) and I handle it without disturbing anyone. Since discovering boards/forums on Diabetes the last few years tho’, my attitude to beating my chest and saying “I am Diabetic” - has sometimes scared me abit, as I was always fairly quiet about it. Tho’ it’s made me feel less alone with dealing with all the crap that hits us.
Hmm, as usual Danny, you’ve got my mind awhirling with thoughts, that’s why I love to read what you write!
Yes, I think you’re right. With having had diabetes for so long, I don’t really know any other way of living and others (kids) didn’t understand what the heck I had when I was 7 (they just knew I got to eat snacks when they couldn’t - but it didn’t seem to bother them). It’s always been what makes me … ME 
and like Karen says - not many people understand what we go thru’ with the 24/7 (I’m OCD as my endo put it to me last week). When I went into the working force at 16, I didn’t even think of telling anyone about it, I just dealt with it and only a few people (HR and my bosses) knew about my diabetes.
Now that I’ve become a diabetic mentor, I’m actually relishing being able to tell people about diabetes, and am sometimes amazed at myself that I’ve come out the way I have being open about it as I’m a fairly quiet person (tho’ you’d never get that impression with the way I have verbal diarrhoea of the finger tips on the keyboard here ) - but with diabetes effecting so many people now - the more we can educate people (tho’ maybe I’m not the best person at times) - the better.
I just have to jump in this discussion…I must admit that for 39 years I have pretty well kept diabetes to myself-especially the complications part. The one BIG exception is my hubby–he has been tremendously supportive: from understanding the hour by hour micromanagement and the frustrations of that; to a nonjudgemental attitude for any BG number or for that matter any complication; to being accepting of dishing out $$$ to support me in diabetes management ie pump, CGM is out of pocket for us. His life has been affected in many ways, yet his love and support grow strong…OK enough mush!!! BUT I just could not do it without him.
As for the rest of the world, I have kept them in the dark-- mostly out of fear of being judged as the “bad” diabetic and the fear of being perceived as the whiner. Who wants to hear about the micro and macro complexities of managing diabetes? This was “my problem” … until i found Tudiabetes where I discovered the struggle for management was not mine alone, but a universal one for PWD. I discovered that the fact that I could not get it “right” half the time was NOT a personal fault, nor a lack of effort. I now am a lot more concerned about educating the world around me, so as to awaken people to the REALITIES of diabetes (the pump is a great “converstion” starter…this. so that people with diabetes everywhere can be supported better, instead of judged more. Because I think that people can do better management when they are understood and supported, not ashamed or alone (IF that is the reason one is quiet about it). Having said that, I know that it can be frustrating to try to explain daily diabetes life to people, and that some days one just wishes to be left alone with “it”. I guess that is one perk of having diabetes–you get to decide who is “in” and who is not!!
I only talk about my diabetes with other diabetics. I have tried to convey to others, even family members but they just dont get it. So I stopped along time ago. The only person in my life that was like a "partner’ in my diabetes was my Mom, she was Type 1 and we walked hand in hand. 
My wife is very proactive in helping with my D. Sharing my readings with her are just a way of letting her know what works and what doesn’t. She has been around when I’m low/high and knows the complications that can come with both. This gives her the sense she has a part in preventing them when possible. The tightrope all diabetics are faced with is easier to negotiate as a team and I wouldn’t have it any other way.
Hi Danny -
This is not something I think about too much. I mean, my husband knows the basics that he needs to know - for example, he knows how to use the glucogon kit - and I share tidbits here and there about latest research or my theories, etc., but I wouldn’t say he understands diabetes in the same way I do - nor do I require that of him. And day-to-day, I only share what I need to share - and he trusts me to do that. He knows I’m pretty independent and self-reliant - I think that’s one of the things that attracted him. As for Tu, he knows I belong and he’s happy I have somewhere to go to share and to learn. I don’t know, I guess I see diabetes as such a small part of our relationship - there is so much more that we can and do talk about. It’s not that I don’t want to or wouldn’t share if asked but most of the time, I don’t feel the need. I’m not one who believes that everything needs to be shared - and I also believe that different people in our lives fill different needs or play different roles.
Intriguing topic & am enjoying reading our varying views.
Danny, you may have hit a key point. There may be a difference due to being diagnosed as a kid compared to being diagnosed as an adult.
I have mixed emotions about sharing with my husband, who’s a supportive, loving person. We’d been married a long time before I was diagnosed T1. Boom, the man’s saddled with a wife with a serious disease. For better or worse, here it comes the worse.
I don’t want him treating me differently than before, but guess that’s somewhat inevitable though hard for me to take. I’m not a lotus blossom & very independent, but he’s a worrier & a fixer. Since he can’t fix, the energy goes to fretting. When I’ve expressed that I don’t like being asked about numbers or how I feel, he becomes somewhat angry. “You almost died. You don’t know what it was like for me to see you unconscious with tubes & monitors. I have a right to ask.” Yea, he has a right. I also have a right to be treated like a whole person. It’s a balancing act.
Equally annoying is having every emotion chalked up to BG by him. Ok, sometimes it is directly related, but not always. First my emotions were attributed to hormones, now BG. Maybe that’s why it’s a sore spot with me.
I don’t want diabetes to be the most front & center thing in our lives. I tell him some things, but not everything. When I get scared of what awaits me in the future, I share that. The day-to-day stuff is mine to deal with solo.
I know I’m not responsible for having diabetes, but I feel guilty how this has changed my husband’s life & our finances. Perhaps not telling him everything is my feeble attempt at shielding him from some of it.
The other day he was clicking through my meter for readings. I felt somewhat violated & told him it was private. It was as if someone was reading my diary, if I had one.
I try hard to see this from his perspective & how I’d feel if he had diabetes. I’d be worrying & want to help & understand what it was like. My intention is not to shut him out or deny his concern & love.
I welcome it when my wife demands to know my readings everyday - I’m completely honest with her and she understands the occasional high readings and the hypo events. Being married and raising our kids, it matters to her to know that I’m doing well with my diabetes control. And if it gives her peace of mind to know then it’s a win-win situation.
Any discomfort about sharing it with a spouse is an indication of a larger underlying problem in the marriage and one that should not be ignored. Better to talk it out or seek help from a counselor to address the issue.
I’m old fashioned, Danny, and anything I say should be just taken as my brutally honest opinion and nothing more. I apologize if you thought my words were directed at you. Same apologies to anyone else who thought I was addressing them in particular.
Was your suggestion directed at me?
Err just to throw the cat among the pigeons here, I was dx at 3 so I had no choice to share as I couldn’t deal with it myself.
I did become secretive and downright deceptive as a teen for various reasons. I squirmed at the thought of telling my college, then my employers… as hospital visits and bizarre antics in the office have to be explained (usually better before it happens LOL). I was a downright liar to keep it all to myself.
So secretive and sneaky was I that my OH didn’t know I was T1 for a good while after we met and started dating (ironically he has T1 too ha ha ha another story…). That said it was no easier to share with him than anyone else I’d encountered before. No-one understood like my Mum and Dad (and even then they only got so much) and they’d had to leave me to it once I was old enough to spend a whole day at BiG school alone.
It was about 2 years into my current relationship I decided I had to ‘share’, our experiences and outlooks were polar opposites, I wanted to be understood and was so mired by the relentlessness of it. It was monumentally scary, I feared I would be judged, advised, interfered with, mocked, basically just have my carefully stacked apple cart upset. But in the same breath it was quite cathartic. ( and yes there are occasions where I could cheerfully bash him over the head for suggestions/advice but there are also times when his knowing about MY condition eases the burden)
D is a HUGE 24/7 responsibility as someone already said, and for the most part it’s ours to own (or not…) but in a relationship surely you have to share a bit? You ask why you would bring anyone else into the ups and downs of this disease? My answer is you already did that in part, my friend, the day you married/committed to your wife. I suspect she already shares the up’s and the down’s without you knowing she does, unless you are super-ace at keeping a poker face when you have a great A1c or a really bad long high that makes you (if you’re anything like me) so foul you could wither flowers at a glance, she maybe just doesn’t fully understand it in a D context.
Basically hon she wants to be involved because it’s you and she loves you, Here’s a little poser for you, God forbid any complications get more complicated, but would you expect her to leave you to deal with them on your own (as you have done all your life) or would you accept the help she most likely would gladly offer?
x x x
My dad had diabetes, and other than knowing that he had to eat at certain times and there were test tubes in the bathroom for testing his urine for sugar. He didn’t get a glucometer until the last 10 years of his life, and it was the big device that sat on the counter. We knew he had good days and bad days, and sometimes needed sugar for insulin lows, but that was about the extent of the knowledge my siblings, mother and I had. He passed away 5 years before I had diabetes.
Living with diabetes has given me a whole new perspective of how dad might have felt coping with this disease on his own. I wish, wish, wish we had understood what he was going through so that we could have been more supportive. And by supportive, I don’t mean being diabetes cop or managing his disease for him. But I could have been more aware of his needs, had more grace for him when he was having a bad day, helped out by cooking his favorites in more diabetic-friendly ways, etc. and etc. I loved him very much and feel terrible that there was an opportunity lost to express that love and care in our day-to-day life together.
My husband is much more aware of my disease and how if affects my life than I was for my dad. He doesn’t interfere with my management, but he supports me in many ways, whether that be by helping maintain a stress-free home, grabbing the nearest bag of candy for me if I’m having a low (and being patient when I turn into Mrs Hypogycemic McCrankypants), supporting my physical exercise and other wellness plans etc. He is a big part of my life and vis versa, being the best buds that we are.
If I didn’t share with my husband some of my frustrations and joys about my diabetes, I’d lose my mind. Sure to him it’s just a number, but he has been educated, by me, what is good and what is bad. He knows when things are low, and does what he can to help me take care of myself, including going to exercise with me, when I don’t want to go. Then there are things that I don’t tell him, because of the fear factor. He doesn’t need to worry about the horrible affects of the disease, but he does want to know about how to help me…when I will accept help.
If I didn’t share with my husband some of my frustrations and joys about my diabetes, I’d lose my mind. Sure to him it’s just a number, but he has been educated, by me, what is good and what is bad. He knows when things are low, and does what he can to help me take care of myself, including going to exercise with me, when I don’t want to go. Then there are things that I don’t tell him, because of the fear factor. He doesn’t need to worry about the horrible affects of the disease, but he does want to know about how to help me…when I will accept help.
Danny I know how you feel about that. I’ve been married for almost 26 years to a non diabetic. He always ask what my bs’s are then has a comment like your wife does. (done the CGM but didn’t like it) I don’t want to tell him or anyone else what’s going on. I tell him enough to let him know what I need. I took “D” in 73 and married him in 84 so he does know alot about me but in other ways (the problems and little discomforts that it brings) has no idea. He now goes to the same dr as me so… But I feel like you do, I take care of it myself, had it for MANY years and just want ppl to let me be.
Like someone else said, I really don’t think much about it. Diagnosed at 21, I never bring it up with strangers, at parties, gatherings etc. I brought it up at work when I felt I had to just in case there was an emergency (and there have been a few) My husband never asks and I’ve never really talk about it. He’s better at telling me when I’m low and making me check it and will get me candy and has pulled me out of unconsciousness many times but I never share my daily BG readings and he never asks. That would be weird. This is the first place I’ve ever really talked about it or discussed feelings about it. I think if he would look at my readings and make comments, even the supportive kind, it would bug me too. Maybe you can suggest to her that it would be better to make more generalized comments like “so how have you been feeling?” You can answer “good” and be done with it rather than comment on a particular reading. Sometimes as a joke when out kids are around we all take guesses at what the number will be!