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Talk Like a Textbook, Not a Diary.

April 14, 2010

Last night I attended the bi-monthly women’s support group meeting hosted by the wonderful ladies of ACT1 Diabetes. This week’s discussion was about depression and diabetes, and featured a guest speaker, Helene Ciporen. But I’m not actually going to talk about our discussion today. I’m saving that for when I actually have time to flesh out my post.

As we were leaving for dinner, I chatted with three other ladies. One girl explained how she had run a race in Central Park over the weekend, but hadn’t done very well because of roller coaster blood sugars. Makes perfect sense. It happens. She said that when she arrived home, she bumped into her landlord, who asked her out the race went. She said that it hadn’t gone very well because she had a high blood sugar caused by a rebound from a low blood sugar and that things were all over the place. The landlord was apparently very concerned and said, “Are you sure you are eating the right?”

Clearly, not the issue. But I, in turn, said, “Why would you ever get into that much detail about your blood sugars with an Outsider?”

In all honesty, I barely discuss my blood sugars with my boyfriend, let alone people who know nothing about diabetes.

Another girl said that when she talks about diabetes, she discusses it as “the body does….” not “my body does…” which helps separate herself from any unwarranted assumptions (you know what they say about assumptions…).

I thought that was brilliant, and said, “Talk like a textbook, not a diary.”*

I’m as open and honest about my diabetes as the next person. I think it’s important for people to know I have diabetes, in case something were to happen. I think it’s important to explain what to do in an emergency situation. But that’s it.

I don’t see whose business it is what my blood sugars have been that day. I don’t talk about my finances, my weight or my menstrual cycle with anyone except close, close friends and family, so why would I go around talking about how my blood sugar was high this morning. First of all, most people won’t even know what that means, and the people who think they know what it means are probably wrong. Sometimes I will share if my blood sugar is low, mostly because it has a noticeable impact on my physical condition. Usually it means “I ain’t walkin’ nowhere no how.” So sometimes I’m late for work, but I just say that. “I was low.” End of story. No cause, no details.

I have observed that these situations can actually cause more harm than good when it comes to teaching people about diabetes because it’s not done in the proper context. They have heard stories about diabetes, and then suddenly here you are with an “episode” and it’s very easy for people to make stupid assumptions and say stupid things.

For me, it’s easier to explain diabetes when there isn’t something going on with me at the time. I find that I usually explain things rather defensively when I’m trying to explain a low or high blood sugar when I’m actually low or high. Which goes back to my initial theory: talk like a textbook, not a diary.

Another girl mentioned that she had been sick from ketones and had called into say her “body was off.” Why not just say you’re sick? I don’t know about ya’ll, but I usually don’t get into that much detail about why I’m sick when I call in sick. You’re sick. Ketones is a perfectly legitimate reason to be sick. If you have sick days, take a sick day. You don’t need to detail about how your insulin pump fell off or you forgot to plug your pump back in after having sex or whathaveyou. You’re sick. You might be Diabetes Sick, and not Normal People Sick, but at the end of the day, unless it’s going to have some definite impact on how my relationship with whoever I’m speaking to, I’d rather just not get into it.

If you have to explain about diabetes and ketones, do it when you can really explain to people how diabetes works, and what happens when there is a sudden absence of insulin, and how and why that can occur. It can be jarring for people who don’t have a clear understanding of how diabetes works, and rather than ask you for more information, they’ll hang up the phone and think, “Wow, her diabetes must be really bad if she has to miss work” when that isn’t the case at all.

Diabetes is an invisible illness, so the only information people will have about what is going on with your health is based on what you tell them. Make sure you’re not giving them the wrong idea. We’re healthy, we’re strong, and we’re awesome. That’s all they need to know!

How much do you share about your blood sugars (and health in general) with people not in your immediate circle?

* This was apparently the funniest thing I have ever said in my whole life because they cracked up, and Karen insisted that I use that as a title to a blog post, so here you go.

  1. April 14, 2010 9:28 AM

    My sister shares a lot about my nieces blood sugars but I think it’s because she is young and most of our family is concerned and interested.

    I think you are right that it’s nobody’s business (just like finances, menstrual cycle, etc) but I think for kids it’s a little different.

    I wonder how my niece will view this when she is older?

    • April 14, 2010 9:31 AM

      I think family is totally fine. I’m sure my mom talked about my blood sugars with my grandmother and our family when they were interested. In fact, my grandfather had LADA so it makes even more sense. I’m talking about co-workers and landlords and the Joe Schmoe on the street… not people who have legitimate reasons to care!

  2. Arielle permalink
    April 14, 2010 9:39 AM

    I so agree with this! I’m in a social circle with someone who is constantly offering more information about her blood sugars than most people can understand. Not only do they come up to me and say things like, “Wow, X’s diabetes must be really bad, she has so many problems” or even, “She must not take care of herself very well,” I’ve also been told that my diabetes must be “easier” than X’s, or “You don’t have any problems, do you, because you take care of yourself and she doesn’t.” I haven’t found a good response to this one yet, other than “Shut up, you don’t know what you’re talking about,” but that’s not too polite. 🙂

    • April 14, 2010 3:31 PM

      I have definitely run into that too! I think that goes back to the whole “my great aunt had diabetes and SHE DIED!!!!” There only examples of diabetes are “bad” examples, so it’s no wonder people have such an effed up concept about diabetes.

  3. April 14, 2010 9:40 AM

    “They have heard stories about diabetes, and then suddenly here you are with an ‘episode’ and it’s very easy for people to make stupid assumptions and say stupid things.”

    That really is the crux of it for me. I don’t want someone to take this teeny tiny moment in all of my millions of moments with diabetes and then think that they know something about me, my health, the disease, anything. We rarely mention when things in life – diabetes and beyond – are easy or good. It’s the hard, frustrating stuff (the squeaky wheels) that get noticed. I try to keep my lips zipped around outsiders for that very reason. If someone asks a question out of curiosity, I’m happy to answer/explain. If I don’t know them well and they don’t know me, I stick to generalities and don’t volunteer any personal information. Strangers in our T1 tribe, however, aren’t so lucky… 🙂

    Yay blog title!

    • April 14, 2010 3:30 PM

      For every 1 bad thing that happens, we have to make up for it with 10 good things, don’t we? I don’t feel like reading my logbook to people so I think I’d rather keep things as under wraps as possible unless necessary.

  4. April 14, 2010 10:29 AM

    I have mixed feelings about this. I *wish* we could all feel comfortable being open and honest with everyone. For the PWD that DO feel comfy being open and honest – more power to them!

    I, like you, tended to keep everything to myself. I struggle at times to share everything with my husband. The truth of the matter is though, he is the one that will take care of me if something goes wrong. He will be the one telling the story to the EMS if that is the case. He deserves to know for his own piece of mind and for my well being.

    The strangers… not so much. But if someone feels OK with sharing. Great! That will hopefully help get rid of some of the barriers that we are up against.

    • April 14, 2010 11:16 AM

      I wish we could too! But I think spur of the moment disclosure can cause more confusion than anything. I’m all for being open and honest and educating about diabetes. But it has to be done the right way, and I don’t think spontaneously sharing that stuff is necessarily the right way to do it.

  5. April 14, 2010 10:40 AM

    Good points. I never shared much D info with anyone besides my mom for years. My husband sometimes has a hard time understanding why BGs can be fine one day and wonky the next, but he’s very good about stopping activity when I’m low or knowing why I can’t eat when I’m high. I rarely show him any BG data.

    It’s a struggle and even among PWDs it’s frustrating sometimes. I met a T1 in the wild last week at a conference, and my joy was tempered by the fact that her first questions were “what’s your A1C?” and “what’s your TDD?” I tried to steer the conversation toward the things we all share (lows, food frustrations, even did a show-n-tell of my Dexcom), but she seemed bent on convincing me her control was better than mine. Sigh.

    The OC is so unique because you all really get it. I’m not sure outsiders beyond immediate loved ones have the capacity.

    • April 14, 2010 11:15 AM

      As I said to Michelle, I don’t really consider immediate family to be Outsiders. I’m mostly talking about co-workers, man-on-the-street kinds of things. I think there are varying levels. People who we see everyday have a much more intimate knowledge of diabetes than Outsiders. so I think we have to balance our expectations.

  6. tmana permalink
    April 14, 2010 11:23 AM

    Realizing it’s different for most T2s than for T1s…

    For the most part, I don’t find a need to “share” unless I need someone to be alert in case of an incident (rare for me) or unless I need to play “mentor” or “advocate” — but I’m a lot more “out of the closet” than I was my first year post-diagnosis. I will admit to being a somewhat atypical T2 in that (1) I’m diet-controlled and (2) I’ve spent some time in the DOC (which is a largely-T1 community).

    Based on what I read, and what I’ve observed in blogs/tweets/forum posts and at d-meetups, I would summarize matters this way:

    The average “(wo)man on the street” (AMoS) is seriously underinformed about any form of diabetes, much less the differences between the various types of diabetes, especially T1/autoimmune diabetes.
    Depending on when “the-PWD-s/he-know/knew” was diagnosed, and by what sort of team that PWD was treated, the AMoS will have been exposed to one (and only one) of many varying (and often conflicting) sets of medical and dietary therapies — most of which are T2-specific, and many of which are considerably out-of-date.
    Because the media focus more on T1 children than T1 adults, the AMoS may not realize that T1DM is a lifelong medical condition, and that many people with T1DM live just as long as people with normal pancreatic function (they just need to take insulin all their lives).
    Even if s/he knows one or more PWDs, the AMoS is not familiar with insulin pumps or CGMs, and may not be familiar with glucometers.
    YDMV. Frequency of, and reasons for, blood glucose testing varies between PWDs — even among T2s who are not taking medications or insulin for their diabetes. Acceptable ranges of blood glucose levels depend on the individual, on his/her method(s) of therapy, and on other coexistent health conditions (among other things).Variability of blood glucose levels over short periods of time vary from person to person, and are often greater in people with T1DM than T2DM.Ketones and DKA, while not exclusive to T1DM, are much more common in people with T1DM than people with T2DM.
    The AMoS is usually not interested in learning more about diabetes, especially not more about your (or my) diabetes. The amount of information s/he is willing to listen to and absorb will often depend directly upon the relationship you have with him/her.

    That said, “textbook” is a good concept: short, impersonal, and informative.

    Great analogy, Allison!

    • April 14, 2010 3:29 PM

      Thank you! I agree with your summation. Short and sweet, I say!

  7. April 14, 2010 1:42 PM

    I try to tell people about it straight-up if it comes up in conversation. I will tell them my BG was 400 and I felt like crap, etc. It can help me figure out what happened to talk it through with friends. I am not trying to shock them or get sympathy. But I try to impress upon them that this is how life can be with type 1…sometimes great, sometimes not. But I carry on and do what I want to do. I don’t make a big deal about it, but state things in a matter-of-fact manner. I feel that it helps them get over the notion that every high or low BG is somehow a reason to call 911 or go nuts. I think the more often that people come across pwd who share what it is really like, even in a casual manner, the more educated the general population will become.

    I probably wouldn’t get into it with a complete stranger, unless somehow the topic came up.

    For some reason most people don’t try to give me advice on how to manage my diabetes, unless I ask.

    • April 14, 2010 2:02 PM

      I think that’s important for people who are in your life day-to-day. But I wouldn’t do that with a stranger, like you said. I wasn’t talking about close friends, I was talking about the random people in your life, the Outsiders. As far as I’m concerned, friends and family are Type 3s and totally part of the club!

  8. April 14, 2010 2:32 PM

    I’m with ya. I don’t even call in sick anymore… I EMAIL in. Greatest. Invention. EVER.

  9. April 14, 2010 2:48 PM

    I find it depends on the context and the way people ask about stuff that determines whether or not I’m into talking about diabetes. I wear my infusion set on my arm, so sometimes some sort of dialogue about things is inevitable. I actually don’t talk about it much with my family. They’re so used to the old school ways of treating it (with shots of regular and lente!) that they find it all to complex now to fully bother understanding. That and they get worried about little things, because… I guess that’s what parents and family do…

    Also, I just thought I’d point out that there actually is a Type 3 diabetes, which is related to Alzheimers… So maybe your friends and family can be Type 4?

    • April 14, 2010 2:53 PM

      They haven’t really proven that Alzheimer’s disease is a Type 3 diabetes, and all the article I’ve read say it “may be Type 3” or it’s “so-called type 3.” And Type 3 diabetes has actually been used to describe a couple other things. I also don’t think people who actaully have Type 3 (Alzheimer’s) diabetes and people who have type 1/type 2 diabetes will ever co-mingle, so I don’t think using Type 3 (Pancreas) is a problem. The TuDiabetes community uses it too. Until it becomes a “gold standard” definition for something, I’m happy to keep using it to describe friends and family.

      • April 14, 2010 3:06 PM

        hey, it’s like we just did a PSA 🙂

  10. April 14, 2010 3:08 PM

    We call diabetes an “invisible illness” because it’s something that can’t be seen, but how invisible is it, really? With type one, we have to pull out our meters and pumps at meals, or inject ourselves. Which means either excusing ourselves from the table, or just doing it right there. People see me eating in classes where no food or drink is allowed, or testing my blood sugar if I am feeling dizzy during a lecture. When I worked in retail, my bosses got annoyed that I had to leave the floor to test my blood sugar when I was feeling low or high, which of course affected my productivity. I don’t think anybody could know me right now and not know I have diabetes. I want them to know how it affects me personally – because I want them to know that it’s more than just a disease, it’s a lifestyle – that whole awareness thing – but you’re right – finding an appropriate way to discuss it is key. Sometimes I slip up and forget I’m not blogging or tweeting to the D.O.C.

    Jumbled unorganized comment

    Sarah Jane

    • April 14, 2010 3:14 PM

      Great comment! I completely agree. I think it’s important to fully disclose things, but in a well thought out manner. It shouldn’t be done haphazardly where you run the risk of scaring someone and having them walk away thinking we’re uncontrolled and – God forbid – sick! We just have to be smarter about what we say in regards to our diabetes, not completely avoid the subject!

  11. reese permalink
    April 14, 2010 3:21 PM

    I think it is easy to not mention the ketones that had you up all night when you are actually calling out, but what do you say when co-workers/your boss ask if you are feeling better/why you were out upong retunr to work? I hate to even utter the word diabetes in the office.

    • April 14, 2010 3:23 PM

      Well, if you’re feeling better, just saying “Yep, all better.” And if they ask why, just say “must have been one of those 24 hours things.” They don’t need to know what “thing” that was!

  12. Autumn permalink
    April 14, 2010 3:47 PM

    I love this post. I tend to overshare at work. Even when I’m “Normal People sick” I feel the need to give an explaination. I’m realizing now though that short and sweet is really the best way to go. Thanks for offering some reinforcement!

  13. April 14, 2010 3:51 PM

    I make a rule of only telling one or possibly two co-workers about my T1. I don’t like those stories you’ve all referred to ala “my great aunt had BAD diabetes blah blah”. I just don’t want to hear it – plus how do you explain to co-workers how far things have come? I share info with DH and a couple of close friends who know about D – 2 of them are T1s which is such a nice sounding board.

    The ‘problem’ with my plan for me came during pregnancy and working. I was put on new meds, my insulin rates were changing, it was a bit messy. I still did my job, but it was more obvious that I was diabetic because I was testing more, etc. That’s the one time in my life where it has felt as thought the T1 has ruled me, not the other way around.

    Textbook response is a goody. I tend to say that I have a ‘clapped out’ organ and luckily this little machine is a pretty good substitute. People seem to get that.

  14. April 14, 2010 9:53 PM

    Back when I was working I had no choice but to share. Unfortunately I was having seizures and passing out and people needed to understand. I would hate when I would call in due to lows or ketones and my boss would act like “being sick was no excuse not to come in.” So then I would have to explain that due to my Diabetes, not a “cold” I could not come in. Then I always felt like I was telling them that diabetes makes me less worthwhile. It’s a very thin line we walk.

  15. April 15, 2010 7:42 AM

    Thanks for your insight on this. I think a lot of times it’s an individual thing on how much you share. But I agree in that employers don’t need to know your reasoning for calling in sick. You’re sick, and you could potentially cause your employer to think that your diabetes gets in the way of your job. Allow yourself to be sick.

  16. April 15, 2010 10:21 AM

    I don’t think most people really care when others are sick. Unless you have the same thing they can never understand it and how one feels.


  17. Stacey permalink
    April 21, 2010 9:38 AM

    This is an interesting post. I’m the significant other of a type 1 and when I was hired at my recent job he was going through a rough time trying to get things under control and was in the hospital in DKA. I made the mistake of telling some co-workers about this because I was late a few times dealing with hospital things. First, upon learning that he has to take shots, one exclaimed, “ooh he must have the bad kind!” (’cause there’s a good kind of diabetes to have, right?) and it just got worse from there. I’m very much a part of helping him with his management now but when we first got together diabetes was just something that involved him going to the bathroom before meals. I knew nothing about it. It’s funny how DKA and 5 days in the ICU will change someone’s perspective. Now, I know what the numbers mean on the meter, I know how to help him run a basal test, how to help adjust correction doses and set insulin to carb ratios and carb count our meals.

    But I’ve learned my lesson as a non-diabetic, that even talking about the things that I do to help my partner, like weighing food or staying up when he’s low at night, etc with OUTSIDERS as you call them, is a no-no. They don’t understand and it’s frustrating trying to explain. Especially when you get questions like, “does he have diabetes because he ate too much sugar as a kid?”

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