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.)
You bring up a good point. I hide my insulin pump and infusion site the best that I can at all times. I find my pump so much easier than the vial and syringe were. No one comments, but I do sometimes see people looking and whispering. I got a fitbit for Christmas though and I get comments all the time. "How's that work?" "Do you like it?" Why don't I get any comments on my pump which has significantly more value to me?ReplyDelete
I also hate it when the endocrinologist demands exactly what was done at this moment to cause this BG. I don't know. I track my readings but I don't track every moment of my life! I used to be much more thorough with a journal to track all of my readings and a breakdown of my day, but it was the endocrinologist who told me they couldn't read the way I was writing it. So I stopped and now they ask why I don't know what I did after lunch 10 days ago. But this is just life with diabetes, isn't it?
I think for me, these things have been a part of my life for such a long time, that I don't let myself think about them. And how much it may bother me. While that may not be totally "healthy" I prefer it that way. It's what keeps me sane and positive.ReplyDelete
Liivng successfully with diabetes requires an amount of attention that, in any other case, would seem evidence of Obsessive Compulsive Disorder. There's something to be said about having to impose psychological pathology to insure physiological survival... I'm just not sure what that is.ReplyDelete
This is great, Kim. When I did have insurance after graduating college, I was old-school diabetes management …and one of the benefits to this is that my diabetes isn't visible to anyone who doesn't already know me. This is amusing to me…considering I don't try too hard to hide my diabetes…but for some reason I like that it isn't OBVIOUS to the people around me unless I tell them. Now with a DexCom, and soon an OmniPod, I notice people at the gym pointing at my Sensor and patting their friend on the shoulder to check it out…it's not a big deal…but it is still something that comes with technology of diabetes.ReplyDelete
Yea! You're getting an OmniPod!? Love mine! Congrats. =)Delete
All we want to do is live a normal life. So we live with these devices, which help us manage our diabetes. Which, sometimes, makes people think that we don't live a normal life. Sigh...ReplyDelete
Incredibly powerful post, Kim. Thank you.ReplyDelete
Thank you for this.ReplyDelete
Oh Kim, I have been in diabetes device burn-out for days now and you hit the nail on the head. It's exhausting physically as well as mentally. What's worse is there's no vacation from it.ReplyDelete
I'm truly grateful for how all these devices have improved how I manage my disease but at the same time I am so tired of all the beeping, buzzing, demanding and coordinating that's involved.
Thank you for saying exactly how I was feeling today....I don't feel so alone!!
There are some really powerful parts of this message that really resonate with me:ReplyDelete
* "Stockholm syndrome" (something I never really understood until you put it in a diabetes context).
* "A zillion apps...is still work" (precisely the reason I don't use them).
* "Doesn't apologize when the device, itself, is wrong". (the only reason I caught a high 299 BG yesterday was because I tested to verify a "low predicted" with 110 and two down-arrows).
* "A lethal amount of a drug I'm trusted to administer" (*gulp*)
* "Stabbing myself with a shard of metal..It's a barbaric requirement" (actually, that's the most 'normal' of all of them, but that's simply because of routine. The word "barbaric" is equally applicable here.)
So many great points, and I'm sure you could write a separate post on each one. But still, I'd feel more comfortable myself with the tracking and decisionmaking than leaving it in the hands of others. It's a matter of trust, and when it comes to my life, I don't have a whole lot of it to give to others.
I love that there are other people who get what we're going through. I know my faith and support from family was the only way I got through the first 10 years without the T1D community, but quite honestly there's no feeling like the one solidarity brings. Hearing people understand what you go through, being able to joke about it because they know, sharing in frustrations...basically feeling normal. :) Thank you for this blog! On the post above, yes, it's work that I wish I didn't have to do. I catch myself hiding my pump or Dexcom sometimes, but mostly I WANT people to ask; I'm not less with T1D, I'm more. Plus I get a kick out of telling people the Dexcom transmitter is my alcohol version of a nicotine patch. Mmm, just a shot of whiskey...lol.ReplyDelete
This is one of the best posts I have read about self-tracking. All we typically hear from the tech companies providing the tracking is data, data, data and how great it is to have all that DATA. But what does it actually mean for my life. Excellent post Kim!ReplyDelete
This is so powerful, Kim. It's a side of the coin that I don't think about often and I'm sincerely thankful for the reminder. I like the data, but it makes looking at data in other areas of life feel more burdensome. It is like I have a data budget each day and most days it is used up by D stats. I'd like for less too, even though I enjoy seeing everything under a microscope. Thank you for sharing this.ReplyDelete
Thank you for this great post. I go back and forth between pump use and pump breaks. One of my goals is to normalize BG levels/stability, exercise and eating, using the pump. The other is to normalize the lived experience of my body--how I actually feel moving around with it and interacting with others with it, controlling BG as skillfully as possible with no pump attached. These machines are tools, and they have advantages and disadvantages. Thank you for writing about this.ReplyDelete
There is a lot to contemplate here, because I've never been able to afford a pump or CGM. At meet ups, I drool when people take out their pumps.ReplyDelete