Wednesday, August 29, 2012

Science Reporting: BE AFRAID. Be very afraid.

People with diabetes have a tendency to live a life tinged with anxiety. Why shouldn't we? We are at higher risk for pretty much every awful thing that can happen to the human body. Problems can accrue over many years, or one big mistake can kill us. Anxiety also occurs from the day-to-day stress of managing a complicated and unpredictable condition. But the third type of anxiety comes from other people. First, there's the subset of people who think we brought this condition on ourselves. It's not even as simple as the Type 1 vs. Type 2 debate (and heaven help you if you're a T2; it's so much worse). Even as a T1, more and more news articles come out all the time that come with the underlying message that I had an autoimmune reaction because I was doing things I wasn't supposed to (drinking milk...handling plastics...fooling around with certain brands of cosmetics as a child).

So, there's that. But there's also the subset of people who, now that we have diabetes, is convinced that UR DOIN IT RONG. (Or, in regular English, "you're doing it wrong.") This can involve, but is not confined to, what we eat, what supplements we might or might not take, what medications we may or may not be on, how many times we test, what range we feel comfortable being in, whether we do multiple daily injections or the pump, how much we do or do not exercise, and more. We make so many decisions every day that are implicitly or explicitly questioned by others. Anxiety.

And now we're being told that we're doing anxiety wrong - that is, we're not worrying enough, and we're not worrying about the right things.

"Diabetics worry about the wrong risks, Hamilton health researcher finds," says a new study.

"Canadians with diabetes tend to underestimate the life-threatening impact of the disease, a national study has found. They worry about the wrong health risks. Diabetics’ biggest concerns should be kidney and heart complications. Instead, they wrongly fear blindness, amputation or erectile dysfunction, the survey found."  (The study is, of course, sponsored by the Kidney Foundation of Canada and two pharmaceutical companies that I'd wager make drugs that support kidney health.)

First, in the picture, it looks like that insulin pen doesn't have a cartridge in it, which is actually vaguely disturbing to me. But that's beside the point.

On one hand, I appreciate the intent of the study - that health care providers should be working with people with diabetes to find strategies that will best support kidney and heart health. That is very important, and if patients don't know what appointments to make or precautions to take, it makes sense to do the study and apply it to the conversation between HCP and patient. But the framing of this article bothers me. It's not framed, "how can doctors better communicate what patients can do to help their heart and kidney health?" It's "look at those stupid diabetics, all scared about superficial things? Why aren't they more scared? About the things that REALLY matter?" Frame it as an education issue rather than an ignorance issue.

Apparently, worrying about silly little things like blindness, amputation, and inability to function sexually is just so uninformed. It's not what the cool kids are worrying about:

"This misunderstanding is 'quite concerning,' said Dr. Richard Tytus, a family physician in Hamilton and professor at McMaster University. 'The reality is that you won't need to worry about being blind if your heart stops beating or your kidneys shut down.'"

Har, har! That's a good one! I mean, really. This is the tone the article is taking.

If there's one thing that I know about diabetes, it's that people with diabetes are quite adept at worrying about many things at the same time. We have to. But sometimes telling us to worry about everything at the same time causes burnout.  If there's one thing I think WE HAVE EARNED, it is the privilege to worry about whatever complications we darn well want to worry about, even if they are "insignificant" things like losing our sight or feet. (There are certainly enough people without diabetes who, similarly "misinformed," love to tell us horror stories about how these things happened to Great Aunt Martha.)

Worrying about heart health is important insofar as it impacts some of the precautions, and potentially medications, that you take. The heart and kidneys should absolutely be part of the regular conversation with a health care practitioner. But, in reality, when it comes to the general process of taking care of oneself as a person with diabetes, it doesn't matter what complication we fear, as long as we are motivated to take care of ourselves. In fact, fear is kind of an awful motivator, even if it is effective.

It's nice to focus on positive motivators; several psychological studies have shown they tend to work better. When I exercise, weight loss is my motivator, whether I need to lose weight or not. I exercise, and get the blood glucose, mood, and energy benefits, whether or not they are my main motivators. I'm not sure anyone says, "oh, I'm only worried that I'm going to go blind, so I'm not going to take care of myself because that's not a big deal. If I were worried about my kidneys, I would do a lot better." (After all, the article doesn't say that these other complications aren't problems, just that we won't have to worry about them if we're dead.) The only thing we have to fear is fear itself. And a whole bunch of complications.

Complete apathy is a problem, but it's also nothing we can solve by blaming the patient. Most of the things we do every day impact every part of us. If there's one thing that might help, it might be ceasing to think of ourselves as a collection of unrelated parts, eye, leg, kidney, heart. Instead, why not think of the whole? One of the problems many people with diabetes find in their health care is being treated as a series of problematic parts, rather than a complete person where everything affects everything else. This often leads to the mental part of diabetes being ignored, which is a shame, as I'm pretty sure it's the biggest predictor of success with all the other parts. This study, or at least the reporting of it, focuses on the "should" - what we should be thinking - and not the "why:" why does this mental disconnect occur, and is it a symptom of a larger problem?

And, after all, isn't too much worrying bad for the heart?


EDIT: Here, for comparison's sake, is a MUCH better way of reporting the same study, with quotations from the same doctor that are much more complete and less dismissive. What a difference!

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