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July 29, 2016
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Angry at the DOC

With my schedule, I am not as active in the diabetes online community as I would like to be. Years ago, Twitter was how I stayed connected and informed, but these days I just don’t have the time to update or read much. Time and energy is more accurate. Sometimes I just get exhausted with the comments and opinions that I hear. And probably not from the perspective that you’re thinking.

The main group that I peruse since it pops up on my newsfeed is a Facebook diabetes group. You would not believe the things that people post on there. Well, you might if you’ve seen them too. But still, some people just floor me with what they say. Not only is it items that are entirely inappropriate for an open Facebook group but also the overall attitude of some people. The thing is: it’s the people living with this disease!

For instance, this week, there was a post about how someone asked if a person was diabetic as they injected an insulin shot. The sarcastic post was “no, I only take insulin for fun.” Maybe it’s 21 years of living with this disease and being outraged at the stupidity of people looking in from the outside or maybe it’s just a high tolerance for the ignorance that does exist about this disease but to me, why be outraged if someone asks if I’m diabetic if I am injecting insulin?

First, maybe it wasn’t insulin. Maybe it’s another type of injection. There are other conditions that do require vials and syringes- even if they aren’t as prevalent as diabetes. Second, use this question as a starting point for conversation! Maybe the person wasn’t sure how to ask about diabetes but wanted to open the discussion. This could be a teaching moment.

My other pet peeve about these groups is the attitudes of people towards their management. People are constantly posting about high blood sugars, hospitalization, complications, and more. Even including the sensitive nature of miscarriage and diabetes. There is the opposite spectrum as well though so I will give them that- people who do well, live this life for 50, 60 years, and beyond, and encourage others to do the same.

But it is the repeated stories of lack of diabetes management and lack of care that turns into emergency situations that I cannot stand. We have all been there and made bad choices, I’m sure. We have all been unaware at some point to the reality of this disease. But my irritation is that people post these comments with what seems like the expectation of pity and sympathy. Accidents happen, this is all true. But if you are purposefully avoiding insulin injections and you end up in DKA, I have no pity on you.

Yes, this disease is hard. Beyond hard. There are no words to describe the daily chaos that is life with type 1 diabetes. It is physically and emotionally tiring. But you know what? It’s up to each of us to do what we need to do to avoid emergencies like DKA. If your pump malfunctions or something insane happens, I completely get it. And I will sympathize with you. But if you post that you haven’t changed a pump site in weeks and didn’t know it was infected which led to insulin resistance, I do not have pity on you.

Gross lack of responsibility is not something we should sympathize with in the diabetes online community. Encourage our friends to do better, to be better. But let’s not pat them on the back and excuse them for behavior that we don’t allow for ourselves. I can’t imagine not changing a pump site that long. I can’t imagine not injecting insulin to the point of 1000 mg/dl. Even in my days of absolute hatred towards this disease (really, when did that end?). Even when I wasn’t or I’m not managing how I should. Even then, I would never expect someone to pity me for ending up in DKA due to my own choices.

Maybe today I’m just feeling hard. Maybe I’m just feeling like we all need to grow up (unless you’re a kid then please stay little as long as you can!). Maybe I’m feeling like I do the work I need to now and I still see blood sugars in the 200s and I still struggle. Maybe I feel a little like yelling at the people who lose because of this disease. Think of what else we could lose. Think of what we’re doing to those around us.

I’m sorry if denial and burnout have gotten to the point of not taking insulin or not changing pump sites. I’m sorry if grief and guilt and pain have made you feel annoyed with anyone who asks questions. I really am. Because you know what? The grief doesn’t end. The guilt doesn’t end. The annoyance with this disease and with people who just don’t get it doesn’t end. It is a long, hard road until we find a cure. And that part just plain sucks. But let’s find a way to be okay despite and in spite of this. Let’s work together to overcome.

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