I’m open about diabetes…until I’m not (Dblog Week)

#DBlogWeek Post Number 2… can do pretty much anything even though I have diabetes and most of the time I talk about it. But there are somethings that I don’t share. Which brings me to today’s Diabetes Blog Week Topic, proposed by Scott, on the topics and aspects of diabetes that we keep to ourselves.

I’m so open about living with type 1 diabetes that I had to stop and really think about the things that I keep to myself.

There are a few things, but I think the more interesting conversation today is less of what I keep to myself and more why I keep it to myself.

I’m much more private about my a1c than I used to be, it’s not a hush-hush secret I just don’t share it as often as I used to. I also don’t share all of my test results. In the interest of full disclosure, the main reason I don’t share my a1c online, and often in person, is to avoid making others feel badly about their own and to avoid feeling like I’m bragging. The thing about my a1c is that it’s “good” but it’s not yet at my personal goal. I feel like the internet often doesn’t get that, and too often I see people share about their current a1cs and their goals and the words from others are less than encouraging, they say things like, “If I had that a1c I wouldn’t be complaining.” Likewise, I don’t share my weight online. Plain and simple, I want avoid negative responses.

I keep to myself conversations about how diabetes impacts intimate aspects of my life such as in the bedroom or the realm of being female. The bottom line for part 1 there is that I don’t talk about my sex life with others, no less strangers on the internet. I’m not Carrie Bradshaw. I can, and will, make this one comment though: Diabetes can really ruin an amorous moment. The best advice is to deal with it with your partner. On part 2, no one really wants to hear me complain about my monthly cycle, so adding the impact of having two X-chromosomes on diabetes won’t make it anymore interesting. I don’t share because it’s just plain TMI.

I don’t often discuss publicly how upset my own family members and friends make me when it comes to diabetes, or my health in general. Being told that cucumbers will cure my diabetes, or that I brought this on myself, or that X dish doesn’t have any added sugar means I can eat it, can be downright maddening. Don’t even get me started on those who deny me cake! Not to mention those who endanger me by nearly feeding me fish or cooking my non-fish item next to their fishy-fish items (I have a seafood allergy). I keep these frustrations private and educate/advocate when and in the nicest way possible because I value my relationships and don’t want to hurt them.

I actually try to keep diabetes talk to a minimum in real life because I don’t want people to think that everything in my life revolves around my bum pancreas. It seems like no matter how little I talk about it though, people will assume it’s the be-all, end-all of my life. For example, I had a PRSA board meeting one morning and came into the office late. A coworker said, “We missed you this morning.” I replied,” Thanks, I was just at a board meeting.” This is exactly what he said next, “Oh, for diabetes?”

Sometimes my openness about diabetes gives the wrong impression, which leads me to keep it to myself a little bit more.

Check out other #DBlogWeek posts here.

10 thoughts on “I’m open about diabetes…until I’m not (Dblog Week)

  1. Rachel… as always, a terrific, heartfelt post. Mine also talks about why I don’t share my A1c online, and it’s for pretty much the same reason. I think this is a great subject, because it’s easy for people to read us online and think we share everything. You set an awesome example. Thanks!

    • Thanks Stephen! I always smile when I get a notification that you’ve commented because you’re always so supportive and I appreciate that.

  2. I have the same exact thoughts on the A1C. I was in a twitter chat one time where it was being discussed and was surprised by the snarky comments. Yes, mine is considered “good” and no I’m not at my goal. I have had better and would prefer to be back there again. It is for the same reason I don’t share that info. I get it. Great post!

  3. Great post, Rachel! When I first joined the DOC, I loved hearing what people’s A1Cs were because I never really knew any other diabetics and what their management was like (was I doing an awful job or not too terrible) and I used it sometimes as a way to feel better about myself, like see I’m not doing so bad or as motivation to keep trying to get it lower. But now that I’ve been in the DOC longer, I can totally understand why someone doesn’t want to share.

    You also touched on an important topic to me about sharing stories about family. I, unfortunately, have had a rough time with my mother (even though I was diagnosed when I was 9!) and I could write stories for days about how she has upset me. As it is, I have written a couple without identifying her but if she were to read it, she would know it was about her. I’ve told her about my blog though and she hasn’t read it so I guess she won’t read the posts but I wish she would so she could educate herself some more. Anyways, I haven’t written as much as I could because I don’t want to ruin the relationship but I’m still hurt and sometimes that hurt does sneak into my blog.

    OK so I’ll end my book of a comment (sorry!) but I could really relate to your post in its entirety!

  4. I share very few A1Cs. When I hit the “below seven” threshold, I posted about it because I was celebrating and didn’t really care if anyone else didn’t agree. I wanted to post about it. But other times I think the specific number isn’t as important. It’s all about the trends, and that’s what I tend to write about if I’m going to write about my endo appointment. That’s what people are relating to. The accomplishment or the disappointment. Not the actual number.

  5. Hi I just came across your blog when I was researching the OmniPod for my 15 yr old T1D son. I am really enjoying it md will b suggesting to Jett that he might want to read it as well. Thank you for being so open and honest. We are trying to live that way as well. One year post diagnosis.
    Jeff L.

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