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.