It’s mine, and I’m not sharing

When we ask people for their impressions of the Diabetes Online Community, there are certain phrases that come up all the time:  Emotional and moral support.  They understand me.  Learning new techniques. Knowing that’m not alone.

For the most part, I agree with those — but there is something about that last one, the feeling-alone one, that the DOC has a way of reinforcing.  Something that makes my diabetes, or more accurately: my life with diabetes, different than everyone else’s.

(No, it has nothing to do with the fact that I don’t have cats, don’t want cats, and don’t particularly like cats, though that is also a difference that I notice all the time).

I consider myself a family guy. I enjoy the company of my wife and kids, and I would do pretty much anything for them – as I expect they would for me. I’ll change my son’s dirty diaper. I’ll buy tampons at the pharmacy. There was never any conscious decision about it; it’s just what families do for each other.

When it comes to my diabetes care though, it’s all mine and nobody else’s.  I treat all my own low (or high) blood sugars, I manage all my own prescriptions*, and I make all my own treatment decisions. The decision to give an insulin pump a try in 2006 was mine and mine alone. The choice to begin a CGM in 2011 was also mine.

* My insurance coverage is courtesy of my wife’s employer, so I will yield some credit for that.

When I wake up in the middle of the night with a blood sugar of 45, I reach to my nightstand on my side of the bed and reach for my bottle of glucose tablets, which I purchased during my trip to the store.

Oftentimes I read about relationships where the spouse will spring out of bed and fetch a juice-box for the hypoglycemic sleeper. Or where families sit down together and discuss their blood sugars, lab results, or meal choices.

My wife knows that there’s a test they have to see how I’ve been doing lately (“That A-C-three thingy?“).  She knows what types of food work well for me and which are more challenging. She knows how I feel about “specially-prepared desserts”, as we immediately and instinctively roll our eyes in sync when they are proudly presented.

Although she doesn’t know how to check it, she knows what a good blood sugar is. In fact, in the early days of our relationship, we were presented with a Newlywed-Game-like question which asked what three-word phrase she said to me the most often.  (Answer: How’s your sugar?“).

But when it comes to the specifics, she’s an outside observer. She doesn’t know about the operation of the pump or how the pieces fit together. She doesn’t know what kind of insulin I use or what it means to “bolus”. She hasn’t a clue what my carb ratio is or how many units of insulin I use in a day.

I like it that way. Many will disagree, and many will say that diabetes affects and involves the whole family. If it doesn’t, you’re doing it wrong. But I believe I’m doing fine on my own, thankyouverymuch.  I also believe I’m alone in thinking this way.

Perhaps it’s a manifestation of the shy, private side of my personality. Maybe it’s because I feel an obligation, as the man of the family, to protect them from the burdens of diabetes, as well as other aspects of life.

Or maybe I’m over-analyzing this. Maybe it’s just because I know that my diabetes is mine. It’s been a part of my life longer than my wife and kids have. It’s my body, my life, and my responsibility.

I know my wife would do anything I asked to help me, and I love her tremendously for that. I also love her for letting me take control of this by myself, and knowing exactly how, and how much, to get involved.

Yet, I feel this relationship is far from typical. Am I the only one?

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Posted on December 11, 2012, in Diabetes, Personal, Support. Bookmark the permalink. 30 Comments.

  1. We are very, very similar. My partner knows what I do when I am low, or what a good/out of range sugar is. He knows why I do what I am doing, but he doesn’t get overly involved. He definitely knows what to do in an emergency is I were to ever have a severe low or go unconscious, but he definitely wouldn’t be springing up out of bed. Not that he wouldn’t if I asked him. I just feel like it’s some extra steps I take.

    He said it well on the weekend about my blog when I asked him if he reads it, he says he does sometimes, but he said sometimes it’s over his head since he doesn’t live with diabetes. And then he back tracked and said “well I mean I Live with it but not WITH it, you know?”

    Which is totally understandable. When I post about my infusion set acting wonky I don’t expect him to be able to relate or even truly understand what is happening..

    I think that was ingrained in me from early in my childhood. My parents didn’t test me at night, even when I was 7 & 8 they made me test myself. I had to have my own alarm set, and if I was low I would wake them (though admittedly sometimes I would just guzzle juice and peanut butter and crackers and go back to bed). They made sure I was extremely independent from an early age and I think it has made me who I am today.

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  2. I think it’s great you want and do take care of yourself. Maybe she should know a little more just so she can understand, but being on the opposite (soon to be ex opposite) end of the spectrum, it can cause undue stress and making the spouse feel like she is responsible for your life more than you are. I guess it also goes YDMV. It includes your relationship.

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  3. You are definitely not the only one. With the slight exception that I made sure my husband had a handle on how to test my blood sugar and manage my pump settings (give a bolus or set a temp basal) for while I was in labour for each of our two children.

    I was diagnosed at 21. I wasn’t living at home anymore when I was diagnosed and I hadn’t yet met my now husband. This has always been MY disease. My husband is very supportive (definitely a “type Awesome”) and if I needed him to be more involved in the daily ups and downs he would be, but I’ve never asked. It’s my thing. But I wouldn’t do it as well without the support other PWD, especially the diabetes online community. It’s nice to be able to chat with others who really understand and to know I’m not the only one dealing with this.

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  4. I think I’m kind of in the middle here.

    The important thing is that you both do what works for each of you. If that means handling everything the way you’re doing it, and it’s working, then great. And the good part is, you’re not “married” to this idea for the rest of your life either.

    Interesting perspective. Thanks

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    • Considering your blog title, I kind of figured you’d be in the middle :). But you’re right, sometimes we get so set in our ways and forget that if it stops working, we can change it.

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  5. I completely relate to Alanna’s comment above. When my brother and I were both diagnosed at 12 our parents gave us practically full responsibility right away. They didn’t test our BS, give us injections, etc. etc. I’ve always thought of this as “my” disease and my responsiblity. My boyfriend understands the basics, but wouldn’t know how to count carbs or anything somewhat advanced. When I’m low in the night he might wake up from the Dex sounding, but then he rolls over! I know he would help me if I needed it, but for now I’m pretty much doing it all on my own and I’m ok with that.

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  6. My parents were the opposite of some of the other commenters – super, super involved for the first couple of years. I think that is part of what actually makes me crave privacy with it.

    My spouse definitely has learned a lot about severe lows. He can (and has) tested my blood when I have been too low and confused to do so (3 times in 12 years). He knows where the glucagon is and how to administer it (never have needed it). That’s about it. I try not to wake him up unless I need his help because, why should everyone suffer? If I nudge him awake and say “37″ or whatever it is, he knows I need his help and will leap out of bed for a juice box. Sometimes he is the only one who wakes up to the Dexcom alarm and he will wake me up. The extent of his involvement with my pump is, “your tubing’s hanging out”.

    As far as the intricacies or technical aspects, I think that stuff is legitimately pretty boring if you don’t have Diabetes. I’d be hard pressed to say I would be interested in it if it wasn’t my day to day life.

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    • My parents were very much involved early on as well (at seven years old at diagnosis, I suppose they should be). Maybe the desire to gain independence from my parents as a kid (as all kids want) has carried through to this day. Being in control makes me feel good. Having to ask for help is essentially saying “I can’t”, and my pride kind of gets in the way of that. My wife has offered to help on quite a few occasions, but I’ll need to be completely incapacitated in order to accept it.

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  7. Not alone. My hubs knows symptoms of hypos, but I primarily do all the treating, managing, buying, etc. I even have my own insurance.

    He doesn’t, however, know what to really do in an emergency, sans calling 911. Knock on wood, I don’t generally get to that point. But, I suppose teaching him emergency basics is something I need to do. Eventually.

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    • Every few years, we have the conversation that begins “you need to remind me how to use glucagon”. Twice, when we were dating, I had an Emergency Room-911 low, and I know she’s terrified of it happening again. Yes, I also need to teach the basics… eventually.

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      • Honestly, I don’t even remember how to use glucagon. My mom always administered that stuff and stopped because it usually just landed me in the hospital anyway.

        But it’s in our house again as a safety measure. Suppose I should read up on it or something.

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  8. Scott-

    Everyone’s relationship with their spouse/significant other is different. The one thing those of us with diabetes have in common is that our disease affects more than just us.

    My husband doesn’t know how to work my pump. Or insert a cgm sensor. Or what my I:C ratio is or what my basals are.

    What he does know is that the emotional side of living with diabetes is hard. Very hard. Couple that with my anxiety and depression, and life with me is no picnic sometimes.

    I am so grateful that he can see and understands all of this. He is the first one I turn to when diabetes makes me feel like crap. He is the rock I lean on. Some days, his belief in me is the only thing that keeps me from giving up.

    I hate that my diabetes affects him too. But I can’t imagine doing this without him.

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    • That last sentence you wrote is quite powerful, and you’re lucky to have him by your side. I get the sense that he can celebrate and enjoy your victories as well, not just bring you up when you’re feeling down.

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  9. I can’t speak for anyone but myself, but I’m definitely in the “this is mine and mine alone” to deal with, end of the spectrum.
    My typical reply to “how’s your sugar?” questions, is “fine”, maybe “high” or “low” if i’m feeling particularly “off”, but I don’t expect the conversation to go beyond that and I certainly don’t expect any action from others. OK, some days it would be nice to get a helping hand, but i’ve never asked for, taken, received, or expected anything.

    I guess the one exception is the DOC, I share more with other PWD than I do with anyone else. Often I do wonder what it would be like to share (in person, not just virtually) a life with someone else with D – it might be totally weird!

    It’s only been recently that i’ve even told anyone in my life (other than my immediate family) that I even have Diabetes – and I do sometimes struggle now with how much to tell…

    Thanks for sharing this Scott! It’s always nice to know we are not alone, even it it’s about being “alone”

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    • That’s my response to most people. I don’t hide the numbers from my wife, because I know she will use them as information and not much more, and because I trust her to be honest with her. My parents, on the other hand, get the ambiguous response because otherwise I’ll get treatment-advice in return — advice based on 30-year-old techniques which don’t apply anymore. I’d rather avoid that.

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  10. I think how you react to this disease depends on a lot of factors. When you were diagnosed, number of kids in your family, birth order, number of kids in your parents’ family, their birth order, their parents’ parenting, their parenting. Then, add in your spouses backgrounds, how independent you were as a child, a teen an adult. What year were you diagnosed? All of this affects how you attack your disease. Two last ones: how your parents interacted as husband and wife and how YOU want to interact with your spouse.

    Whatever you’ve found that works for you is right. If you and your spouse are communicating well, there should be no problems. The only thing I’d say is make sure that you regularly ask if SHE/HE has any concerns about your treatment. She/he may want to know more for their peace of mind.

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    • You are absolutely right, Tim. I think everything in life depends on those things. But those last two are key (again, in life – not just in diabetes). I see so many relationships that follow the same path of the relationship their parents had.

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  11. My husband definitely helps. He didn’t at first, but if possible, I will have him assist with things. He’s in charge of figuring out the carb counts for dinner. He cooks, so I figure it’s the least he can do since he knows what’s in it. And I do every other meal / snack I eat, so why not this one? He also fetches juice boxes when I’m low, but rarely when sleeping actually because I feel bad waking him up and honestly I’m perfectly capable of making it to the fridge myself. He knows how to test me — in fact, he did it the other day when we were driving home and I wasn’t sure if I was low. I was, so then I pulled off at the next exit.

    He knows what BG numbers and A1c numbers mean, but he doesn’t go to the doctors with me. I don’t give him a blow-by-blow description of the day, but if I’m really high or low, I tell him. I figure that the least my husband can do is help in some aspects that are help-able. I mean, really, why not? It’s not like diabetes is going anywhere and I feel like it eases some of the physical and mental burden to have someone around doing it with me.

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    • I’m the cook in my family, and I always keep the carb-counts in mind when preparing a meal. I suppose if I wasn’t the one doing the meal-prep work, then I would involve the one who is doing that work a lot more!

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  12. This is fascinating – and making me think. That could be interesting… (me, thinking)
    I do want M to understand the numbers – and he does.
    The other night I slept through Dexcom’s screaming. He didn’t and woke me with a juice box in hand saying, “Dexcom says you’re 32.” He was a little stressed. I tested, I wasn’t 32 but, I was grateful. I don’t expect him to make d-decisions. I do hope that he has a clue what to do if we were to hit an emergency situation. We did practice with an expired Glucagon…
    I was diagnosed at age 54 – we both went to the classes and he came with me for some of the pump training. He doesn’t come with me to doctors’ appointments.
    He does all the grocery shopping and is a champion carb label watcher!
    But – we trade off when necessary – and have done that for years. The first time I went away, he ended up calling me so he could find the pediatrician’s office for a sick kiddo!
    I think all couples/partners find their own comfortable spot for dealing with diabetes and any other issues that they are facing.
    And – he doesn’t know this, but I really, really want to try Dexcom in my arm and there’s no way I can do that by myself. Don’t tell him!
    I like all the comments you got on this! Made me think more…

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    • I never thought of how the chronology plays a role, but you bring up a good point. Being diagnosed after marriage means you go through all of the initial shock, hospitalizations,and training together. I don’t think that can happen retroactively.

      Go ahead and try the Dex in the arm. I wrote a tweet one night about trying to put my CGM sensor in my arm, and suddenly I had a whole cheering section (of four or five) encouraging me to go for it… and I couldn’t back down! That kind of pressure and encouragement is sometimes what we need.

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  13. What a fantastic post and discussion!

    I often feel guilty when my diabetes spills out into the lives of my loved ones. They already carry a burden of worry and helplessness.

    There are some great examples of how they can help in the comments above, but aside from some of those things, is there really much they can help with? Maybe I feel this way because so much of my diabetes struggle comes in the way of the emotions and mental mess of things.

    Very thought provoking discussion here. I love it!

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    • I think there are things they can help with, as some of the other comments have suggested; mostly treating lows and dealing with emotions. Fortunately for me, I haven’t gotten to the can’t-help-myself-low point in a long time, and I’m pretty good at keeping emotions in check. Also, finance plays a big role — when it comes to forking over hundreds or thousands of dollars for a new CGM or pump, that’s not the kind of decision that one should make without their spouse. It’s not so much “helping”, but it is certainly being involved.

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  14. “She knows how I feel about ‘specially-prepared desserts’, as we immediately and instinctively roll our eyes in sync when they are proudly presented.” <–this made me fall in love with your blog. We were just at a dinner where the host proudly presented such a dessert, and it was excruciatingly annoying. Everyone in our family made sure to each have a big piece of the alternative dessert–a chocolate sheet cake, normal-people style.

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  15. I was that way 100% until I met my man. He actually wants to help and asks me questions and remembers the answers! So after some adjusting I do give him some of my burden. He’s always eager and it has helped me relieve a bit of the stress.
    I had no idea what it was like to live any way other than the one you describe. I get it.

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  16. My husband has been pretty hands off but I just got a CGM a few weeks ago and he really likes being able to see where I am blood sugar wise. In the morning when he gets up and I’m still in bed he’ll grab the receiver and let me know what my blood sugar is and how the night looked. His wanting to be more involved is partially because of this new technology but also because I’m pregnant. I think for wives, for couples that do end up having a baby, the husbands might get a stronger feeling of protectiveness that might jump start more general diabetes awareness. Part of me feels like, wait a minute, when it was just me you didn’t seem to care as much, what gives? But I also know that I have also been much much more vigilant than I was when it was just me. It just makes sense that he would want to be more involved when suddenly his child is growing inside this body that requires so much extra maintenance.

    Although the other night my blood sugar got low and I got up to treat it, like I always do, quietly without waking him or talking about it, and in the morning when he saw the CGM line had dipped in the middle of the night he said, “That’s probably why you smelled like juice when I rolled over.” In the end, it is my disease and always will be.

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    • Congratulations on your upcoming child!! Being a father-to-be (especially for the first time) certainly does have an effect on a man. I know that when my wife was pregnant, I had a new-found interest in the things that she, previously, was perfectly capable of handling herself. Also, I caved into years of “pressure” from my doctors and decided to start using an insulin pump around the same time — thinking that I needed to take care of myself so that I could take care of my child. I’m wishing you lots of luck and happiness during this exciting time in your life!

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