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Tuesday, March 14, 2017

Attention, Please: Empathy Produces Curiosity

One of the first things two separate rheumatologists said when disinterestedly diagnosing me with fibromyalgia was: "Well you seem to have all the markers, except you're not overweight."

Since then, every medical professional I've encountered who has been aware of my diagnosis and ongoing nonspecific symptoms has made a point of the fact that I don't need to lose weight. As if having that one additional marker would have cleared everything up earlier and absolutely and saved us all the trouble.

I received my fibro diagnosis at the apparent end of more than three years of overall deteriorating health and diminishing efforts to both name and treat my symptoms. For a while, I was giving blood for new tests and attending appointments with medical specialists more frequently than I was sleeping, it felt like.

My primary care doc was kind and committed. When I'd show up at her office every few months because I couldn't bear just carrying on without some kind of relief - even if just in the form of professional commiseration - she'd test again for Lyme and Lupus; ask again what, when, and how; and offer another referral, along with the occasional drug. At last she said, "Your next move is to see a rheumatologist," and sent me off to one of the remaining medical centers in our area I hadn't been inside yet, carting my inflammation-marked blood work, pain, and debilitating exhaustion.

That's when, in successive appointments a week apart - with more needles and vials in between - I was told, in not precisely so many words, that I could make all this much neater and more satisfactory if I weighed just 20 or so more pounds. In fact, at the time of these appointments, I was feeling the worst and was at the low point of an unintentional drop of close to 25 pounds. (Within a little over a year afterward, I had gained most of the lost weight back and plateaued within a high-normalish range for my middle age.* I was also coincidentally feeling better for longer periods of time.)

This is not meant to be an essay on the relationship of body weight to health. I have really nothing of value to offer about that. But I was prompted to pay attention to it this week when I read an upsetting piece in The Establishment about "prejudiced prescriptions of weight loss" that have caused serious harm. The author describes a series of medical misdirections given by physicians who did not pay attention to what she was saying, feeling, or exhibiting, or to their professional and personal obligations to find out more than what they immediately noticed: the patient was fat. I recommend reading the piece.

In addition to learning about the experience of the author and a few others she reported, I was struck by how frustratingly familiar the kind of response physicians provided was. Just a couple of weeks ago I was in the office to see my new primary care doctor (soon after my fibro diagnosis I happened to move out of state) about another medical issue. Although my appointment was to address a topic she had pursued, one of rather minor interest to me but she's the doctor so I'm game, I managed to mention: "I have been experiencing what I guess is a flare-up of the fibromyalgia for about six weeks now." I said that I was taking the medication prescribed by another specialist she'd recommended, but. . .

Then I didn't actually squeeze in any more details, such as that this was the worst I'd felt physically in over a year and for the longest stretch of time, before she responded: "So that's under control now? Good." Literally either not hearing - or caring - that I had just stated the opposite.

This might not even be a post about fibromyalgia or any other common diagnosis and how doctors need to slow down and pay attention to us and what is the deal with our so called health care system if nobody bothers to care. I am blessed to have, for now, excellent insurance and access to so many professionals who have helped me and lots of people I love and even more people whose stories I don't know, but if given the opportunity to know, I hope I would receive with openness and not ready platitudes or prescriptions.

Martina's piece rightly named the problem prejudice, which by definition bypasses both curiosity and empathy. I get it: we are busy (for example, doctors), we are needy (i.e., patients), and we are way too often repetitive (well, everyone - it's how communication and connection work). But we are not ever redundant. Yet, when we are not careful, care-full, we can't really care well.

It's a devastating feeling to sense that I am redundant to the person I am with, especially if I trust and am vulnerable with them. One of the least things I can do when I am hearing or reading about an experience someone is having - one that they are inviting me to care about - is to listen and take action to learn more, even checking to see if the knowledge (perhaps expertise!) I brought to the conversation is relevant.

* I'm referencing popular medical ranges defining normal ("or Healthy"), obese, and overweight  based on BMI. However: (1) as the Establishment piece notes, there's not necessarily agreement on what those terms mean or their health consequences; and (2) those normal weight charts don't reflect real life statistics for demographics in the U.S.

For a whole other bit on paying attention, there's this on The Imitation Game.

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