There's this idea of a "quantified self" - that the better we can track, measure, analyze, and interpet our own personal health data, the better we'll understand ourselves. I heard a whole bunch about it at the first Medicine X conference; it seemed everyone was enamored with the potential of self-tracking tools: blood pressure, sleep patterns, heart rate, you name it. And for people living with diabetes? Whoa-ho! We're the original self-trackers; so open to wearing gadgets both on and underneath our skin, accustomed to the charts and graphs and incessant flow of data. Tiny computer directly on your eyeball? Of course they'd want that!
Except that I don't. The truth about self-tracking is that I hate having to do it, and I hate all of the "add-on"s that come with it.
I can mostly convince myself that all of the self-tracking I have to do is "fun", but I think it's largely because I'm at a point where I have to be okay with it for the sake of my sanity. It's a bit of Stockholm Syndrome, really: the longer I wear an insulin pump, the more I want to buy it accessories; introduce it to friends; to humanize it by naming it. I have to wear these devices that keep track of my blood glucose trends and insulin delivery, and the majority of the time the concept doesn't bother me because I have grown used to it. Having the choice between a zillion apps and devices is a luxury, really, but the act of using them is still work.
And I resent it.
Because while seeing my blood glucose trend up or down in nearly-real time is helpful, the constant flow of data can be an overwhelming experience. I watch as the amount of glucose in my blood waxes and wanes; the tide washing over my brain every five minutes as a new reading emerges. It impacts how I behave; what I eat; how I move; how I feel. It demands my blood. It scolds me. It doesn't apologize when the device, itself, is in the wrong.
The fact that I wear an insulin pump that can tell me all about my insulin delivery is great, but it also means that I am wearing a device that most of the time contains a lethal amount of a drug I'm trusted to administer to (and manage the doses of) myself. It gives me more to worry about - are their air bubbles in the reservoir or the tubing that I can't see? Has the infusion site clogged up, or the cannula bent? Am I sure I only put exactly the maximum amount of insulin in that new cartridge? Do I have enough battery life left to last me the day?
That I can test my own blood at home is a blessing, but I curse the fact that I am stabbing myself with a shard of metal several times a day in order to gain that information. It's a barbaric requirement.
And when it really comes down to it, I resent that self-tracking erodes the invisibility of my disease. An insulin pump and CGM provide me very valuable data, but they also mean that I am never simply me, physically. My tossing and turning at night must be done carefully; my clothing choices must account for how they'll allow me to access or disguise my robot parts; a journey through airport security will never be simple; even the use of a toilet requires intricate and meticulous maneuvers that preserve infusion sites and sensors. These devices are a physical and constant reminder that seem to cruelly whisper to the world, I am different. Something is broken here.
Wearing self-tracking devices means that not only am I working on managing diabetes, but also managing the psychosocial impact they have on who I am and how I feel about myself.
And that impact? Well... it's hard to quantify.
(Update: I participated in a live Google Hangout broadcast on this very topic, hosted by Stanford Med X - find it here.)