At least once a day a picture of someone’s blood glucose meter reading or continuous glucose meter (cgm) graph or posting of someone’s HbA1c comes across my twitter feed. All by well-meaning diabetics who are trying to share their experiences – for support, to relay information, to pat themselves on the back for the very hard work that is the life of someone with type 1. But I am asking them and all diabetics to please pause before posting your blood sugars.
I’m not trying to police twitter or deny someone support. I’m not trying to shame them for posting or say that I don’t applaud their hard work or stand with them in the hard times. But I am standing by the many people who see those tweets and are indelibly hurt.
Managing type 1 diabetes is a never ending struggle. Highs and lows can happen no matter how hard you try to be a “good” diabetic. You can calculate your basal rates and boluses as precisely as any person with a Ph.D. in mathematics but diabetes has its own mind and it won’t follow the rules. But we still try every day, all day, the entire year without reprieve. In fact, it’s worse than that – not only do we not get reprieve we often face judgment or are told that we haven’t done enough – we haven’t tried hard enough to “control” the uncontrollable.
Of course we want people to acknowledge our successes – when we hit that perfect 100 mg/dL or that medically desirable (and often illusive) HbA1c under 6.5. And of course we want the support when we’ve had a night with 2 low blood sugars in the middle of the night – the tiredness and misery that come from having to wake up multiple times – only other type 1s (and the parents of young t1s) can truly understand. That is why I like the diabetes community, we are supportive and understanding. But we can be supportive and understanding without sharing numbers and graphs.
In eating disorder communities, we learn early on that sharing numbers is more harmful than helpful. Saying that someone ate X calories a day or someone gained or lost Xlbs in treatment can negatively affect both the sharer and those who hear it. Hearing that someone else could survive on X calories may convince someone else that they should only eat X calories a day or they aren’t as “strong” as someone who restricts more. Hearing someone lost Xlbs may mean someone else thinks they are not skinny enough to “really” have an eating disorder and they need to lose more. For the sharer, sharing these numbers can set limits they feel they need to meet. If they are in recovery and slip up, these numbers may come back to haunt them.
I argue that sharing blood glucose numbers can be equally harmful – for all diabetics but especially to those suffering from diabulimia (or other type 1-related eating disorder, ED-DMT1).
When I see someone post a cgm graph, all I see is my failure.
When I see a blood glucose, all I see is my failure.
When I see an HbA1c, all I see is my failure.
I see that I’m not doing enough. I see that no matter how hard I try, my efforts will never be enough. I see numbers that overwhelm me and make me feel like giving up and going back to the days when my diabulimia was at its worst. I mean what is the point in trying if my blood sugars will never reach that “perfect” number or if my graph is lines spiking up and down?
I know others see this too, not just those with eating disorders. Other people who are struggling in their own management see these numbers and likewise feel the unending pressure that they are not good enough. They may even be more afraid to share their experiences because they feel uncomfortable that it won’t match up to someone else’s. Or if they see what someone puts up as a “bad” graph, and someone else’s is much more volatile, what are they to think but that they are really really bad.
And I don’t think these things help the sharer either. If you post that “perfect” A1c, what happens when your number is higher at your next appointment? If you post that ideal graph, what happens when it’s out of control another time? More often then not, I’ve heard people express disappointment and frustration and even depression when they can’t hold those “good” numbers.
I too have to be careful with what I share. I don’t share the graphs that go up and down and I’ve rarely publicly shared my highest HbA1c because I don’t want another person with diabulimia to think this is what it takes to be diabulimic. I certainly – especially in the midst of recovery – could use the support that might come with sharing these things. But the pain it could cause others is too much. I have a few people who know how hard I’ve been fighting and how hard I fight every day to slowly bring my A1c down while dealing with the weight gain and extreme mental and physical discomfort associated with recovery. I want someone to look at the numbers and say – I can’t believe how far you’ve come. Or tell me that my graph isn’t that awful. But if I post that graph – how many other people will be affected by it? If I say my numbers, how many other people will struggle to deal with those numbers?
I’ve been told by some in the DOC that I need to just get over it. But there’s no “getting over” something that comes into your life every day, that you can’t escape. Twitter doesn’t have a mute button for cgm graphs. I scroll by them as fast as I can. I take a deep breath and remind myself that I am okay. I work on my own recovery and try to not let the numbers from others derail me. It’s hard though. And I know that it’s hard for many others too. I know no one means any harm by it, but it is harmful.
So please pause before posting your blood sugars.
In fact, please stop posting your blood sugars.
The diabetic online community astutely noted another reason not to post blood sugars – because it can be painful to those who cannot access insulin or technology. Imagine what some are going through right now as insulin prices soar and they are rationing their insulin, perhaps taking less than what they need, resulting in persistent high blood sugars. Or imagine the person who would love to have a cgm but may never be able to afford it. These pictures and posts can be hurtful to them as they see what they don’t have access to. I think it can be helpful to pause and consider how these pictures and posts may affect others, see it from their point of view. We can still tell our powerful diabetes stories without these posts, they remain as important and impactful. Perhaps even more so since we know they come with the compassion of understanding our fellow diabetics’ struggles.