It’s Diabetes Month. A whole bunch of you are already quite familiar with diabetes because you are living with it, or loving someone who lives with it, or you care for people who are living with it … and on and on with prepositional phrases all over the place. On top of the place. UNDERNEATH THE PLACE.
Sorry. It’s been a while since I wrote anything with so many prepositions. It is exciting, after I got over the initial trepidation, on top of being a little tired today, with so little sleep and so many prepositions on tap.
Sharing my personal story with diabetes has felt harder lately. There’s lots of advocacy built around “I can do anything!” sorts of messaging, which is only partially true. (I mean, let’s start with the fact that I actually cannot make insulin. Cannot. Haven’t made a lick of it for 35+ years, and I have the c-peptide tests required by my insurance company every few years to prove it.) Acknowledging the limitations of diabetes isn’t always well-received for a myriad of reasons, and if we’re not hearing about success, we’re hearing about life-altering complications, so it sometimes makes the success stories and the duress stories of diabetes seem like they are the dominant narrative threads in society.
But holy shit, the prepositional phrase-ish gray areas.
I am living with diabetes. Yep. Also aging with diabetes. I’m living with severe anxiety with diabetes. (Doubled down on the prepositions for that one.) I’m raising children who experience my diabetes through their own unique lens. Most mornings, I’m running with diabetes. At times, I’m running from diabetes. I’m insurance-company wrangling with diabetes (and for diabetes and sometimes in pursuit of inevitable financial ruin with diabetes). I’m succeeding with diabetes. I’m pandemic’ing with diabetes. I’m parenting with diabetes (and with Chris). I’m partnering with diabetes … that one sounds more harmonious than I had intended.
But I’m not always advocating for diabetes these days because talking about aging and complications and the thought processes that accompany middle age in general end up making diabetes feel like a drag, even when it’s not actually a drag. (I don’t mind getting older. I am weirdly at peace with it and it feels good.) I don’t want my life to revolve around diabetes. I don’t think about diabetes all day long, and generally speaking, diabetes doesn’t feel like a major player in my days, but it does remain a reliable current of electric inconvenience in my life, with occasional jolts of fear here and there.
I wish this shit was cured. It’s kind of exhausting, even when it’s not dominating a day. Doable, though. But a bit of a fun vacuum.
The long game of diabetes bubbles up, though. The emotional cost of having to consistently plan for the “worst” while trying to stay in the moment. The flares of fear that go up at bedtime when I think about the small space between 80 mg/dL and 40 mg/dL. The time spent on the phone with insurance companies, at doctor’s appointments, in line at the pharmacy. The cost of the medication required every day in order to stay alive. I’ve been using the same insulin since 1999. It used to cost $21 per bottle, and in 2019 it was priced at $332. Yes pharmacy benefit managers and yes lockstep price increases from the Pharma companies and yes the hoops that need to be jumped through in order to change this rotten pricing process but when did it become okay for this price to continue to rise, to continue to price people out of existence?
So awareness campaigns about how well we’re all doing? I don’t know how to add to that without feeling disingenuous. I’m doing well but also have diabetes and it’s not the walk in the park some advocacy hashtags would have you think.
This disease looks too “manageable” to the outside world, and the urgency for a cure is sometimes lost in the inspirational stories. We’ve made so much progress, as a community of advocates and storytellers, but I’m so excited for more. How about an acknowledgement of what it takes to advocate for your health and well-being while dealing with diabetes distress, burnout, or depression? How diabetes connects with mental and emotional well-being? About the stigma of living with diabetes, and how to address it? About the price of insulin and other medications necessary for living with chronic illnesses. About how to better understand and support families living with diabetes.
About what it’s like to be disabled in a time when underlying conditions are positioned as something that devalues you as a human being. I’d really love to see people aware of more than their own personal circumstances and hurdles; showing more empathy, more compassion, more efforts to take care of the community instead of the few with access and stability.
It’s Diabetes Month. What changes? What happens now? How do we do better, and help more people feel supported (long) after diagnosis?