Thursday, October 18, 2012

The Antidote To Fear?

Last week I saw what was probably intended as a passing comment, claiming that "information is the antidote to fear" when it comes to health. So trim and concise, that thought.

Coming specifically from the viewpoint of a patient living with type 1 diabetes, I'd like to respectfully disagree with this idea. I think the statement is an oversimplification of a much larger issue.




You see, information is fortunately/unfortunately never in short supply for someone like me. I have access to so much of my own data: blood tests, CGM readings, carb counts, insulin ratios, basal rates, and the list goes on. I've been forced to do self-tracking for the past 26 years because that's how you figure this diabetes thing out: week by week, day by day, hour by hour, and sometimes minute by minute. And not only do I have this data, I'm expected to organize it - not just for my own use, but for my doctor. And then it's not enough to simply have it; I have to interpret it, too. Every little thing I do is supposed to be quantified and recorded. Every fluctuation accounted for. And when it's not - when I have a half-filled in log book, or fail to do the basal testing I promised to, or don't live up to the expectations that were set - it's my fault. As patients it's not enough that we have to live with the disease itself; we have to live with the data management as well.




And you know what? It's effing exhausting. Information is actually the antidote to being well-rested, as far as I'm concerned. After all of the "living it", I'm expected to then analyze it. I'm expected to pick apart the 3,427 things that affect my blood sugar in order to figure out what exactly went haywire this time, yet even that won't predict what may happen next time. I know of no other disease state where the burden of such intricate daily care is placed primarily on the shoulders of the patient (or their caregiver). We wear so many hats each day, and while information can be useful the sheer amount of it can sometimes back us into a corner. When we have more than we know what to do with, information becomes a hinderance rather than a help.


Let's not even get into the fact that much of the information I'm getting isn't even correct, nor can I tell when it is and when it isn't - the food labels, the glucose meters, the CGM readings. Do you want to know the antidote to my fear?

 Accuracy.



The idea that information is an antidote to fear ignores that there are often very strong emotions tied to data, and what that data represents for the patient. When we see a 300 mg/dL on the meter, that tends to say something about us to our health care providers. That "something" may not always be the full truth, yet it is something we still have to face, explain, and justify. We feel guilt, shame, anger, or disappointment with that data. It doesn't speak to what we tried, how hard we tried, or what else was going on in our lives at that time.

Data, when interpreted by humans, can impart judgement - and patients living with a chronic illness already deal with plenty of that. The human element of self-tracking can't be ignored.



Information may not be the antidote to my fear, but maybe empathy and understanding can be.

18 comments:

  1. "The human element of self-tracking can't be ignored."

    Preach on, Kim. Preach. On.

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  2. Freaking awesome post! I stopped using a CGM a couple of years ago for several reasons, but one of them was the information overload it gave me. I felt overwhelmed with all the data and it was making me obsessive, but not in a good way. Living successfully with T1 means that we have to strike a balance - it means choosing sometimes to NOT look at the information we have at our fingertips (literally) and choosing to live life instead. It's a tough balance and definitely one that comes with a fair amount of guilt and anxiety. But it is a balance I have to reach for in order to stay mentally sane.

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  3. Fantastic post. Thank you.

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  4. Kim, so true and well written. I'm right there with you. I not only have this for myself 24/7 but manipulate all of this for my daughter as well. I talk to doctors about both of us, explaining every little detail that is logged minute by minute and day by day. We should have the answers and corrections for everything, right (Ha!). This is one of reasons why I exercise everyday!

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  5. yessssssss. YES. i feel like printing this out and handing it to people when i am too exhausted to answer "how is L doing with her diabetes". just, yes.

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  6. amen, sister! as i sit here, staring at a lunch post-prandial reading that is ridiculously high for no apparent reason, this is what i needed to hear. sometimes the information can be so overwhelming and discouraging. somewhere there is a balance between too little info and too much. there has to be.

    time to take a deep breath and carry on. empathy and understanding, ftw!

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  7. information, in and of itself, can be good...however, the time it takes and the perceived mocking that is heard inside one's head when looking at it IS NOT good.
    UGH!

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  8. I try and try-- everyday--- for my son. Some days are good-- the last 2 days have been awful. I don't even know what's going on ?!? I made changes to his Lantus last nite, and carb ratio's today--- no improvement. I hate this

    julie

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  9. This is so good.

    Now I am sitting here thinking, how can information be the antidote to fear when there is so much to fear in that information? If my information is that I am really high or really low, how is there no fear about the complications?

    I obviously have a little to work through on this...

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  10. The day I downloaded all three boys pumps for the first time? My head exploded. Havent been able to put it all back together since. Great, great post!

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  11. Information, by itself, is not the antidote to fear. Organized and summarized information can sometimes help.

    Google's mission is to "organize the world's information and make it universally accessible and useful". When I can type into a search box: "Why is my blood sugar 324 and how can I get it back to normal and not have it happen again" and get a simple answer, then I might believe that comment. But not now.

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  12. Kim, this is a brilliant post. Thank you!

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  13. I saw my endo yesterday and we discussed just this issue. I was an early adopter of the CGM, but quickly stopped using it due to inaccuracy, error messages, and general frustration. I now have a Dexcom, and use it most of the time, but take a few day holiday now and then. My blood sugar was 300 when I arrived at my appt yesterday, but my A1c was 6.6. That information does nothing to dispel my fear.

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  14. Hi,

    My name is Aaron Capp I have written several cookbooks for diabetics. But what I would like you to help me promote the writing a new book call "Fighting Kids Type 1 Diabetes" The book is about helping parents cope with Type 1 diabetes as well as looking for ways to help prevent it. 60% of the profits from the book will be for diabetic research the other 40% will be for production and promotion of the book. If you promote this book on your blog I would be happy to acknowledge your efforts in the book. You will find more information at: http://aaroncapp.com/fighting-diabetes/

    Hope You Have a Great Day
    Aaron Capp

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  15. Thank you, thank you, thank you. THANK YOU

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  16. I agree, the statement is an oversimplification, yet very catchy :)
    Knowledge & Wisdom are the antidote, not information! Time to reflect and get comfortable with the "data" is needed before you can move forward. Otherwise actions are simply reactive and do not lead towards sustainable approaches to behavior change and modification.
    Much as I wish diabetes management could be like "riding a bike", it's not - but I've found that by cultivating positive habits, it's much easier to digest all of the data.

    Thanks for sharing and being open!

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  17. Thank you for articulating all of this! A perfect post to read a week after my last endo appt. I have a hard time maintaining a logbook because it feels futile, and while it can reflect moments of "good control" back to me, it also reflects the ways in which the day-to-day management can be inconsistent, and inexplicable fluctuations happen, and patterns can be hard for me to discern. The fact that I'm on a Mac, without the ability to do much with data from my devices (because so much of the software is PC-only), means that I don't have the choice to easily automate that work.

    I made a comic essay about this (in paper format for a zine) -- I will email you to see if we can arrange a postal delivery.

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  18. Yeah, sometimes you just wish those document archiving systems had some sort of "human empathy option" or something, just so it can understand your predicament.

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