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I went to a new endocrinologist yesterday. If you read this blog you know that when I couldn’t get my last test results from my previous endo (after a high potassium level that turned out to be a mistake when I retook the test) that was the end of the line for we two. 

Since one of my great commitments is to help health care providers better understand the patient experience so that they can partner with and empower patients to perform better self-care, I had my antennae up during this visit. 

I will say overall my new endo (no gender to preserve anonymity) came up both exemplary, and lacking in something I particularly care about and feel is invaluable. Early into the intake endo determined we should lower my frequency of lows, as the greater the variance between highs and lows the greater irritation to the blood vessels. I was instructed to take less Lantus and likely up my Apidra: The overall goal is to have less up and downs. So I'm to test as I do now and send the results to endo on a weekly basis. Frankly no endo has ever asked me to do this, so kudos here. Endo also listened and respected my firm stance when I said I have no intention of letting my A1c get above 6. Endo said it may during this transition, but if so, then we'll get it down again. I liked that I felt heard and I know that made me feel greater enthusiasm to make the transition.

Where endo faltered in my book was in creating relationship with me as a person/patient. The focus was almost entirely clinical, scientific and task-oriented; specifically what I needed to do and how we were going to do it. 

Yet, there were so many opportunities when endo could have given me a pat on the back, a sense of partnership, encouragement to continue all the good work I'm doing and commendation for my current results. This would give me even more juice to keep doing well, and I'm already highly motivated --imagine your average patient.

Here were a few missed opportunities:

1. I told endo I intend to be one of those people who gets a medal for 50 years of living successfully with diabetes. Endo made no response: My words just hovered over the desk between us. I felt foolish and unheard.

2. I told endo I don’t want my A1c to go above 6 because the first dozen years my blood sugar was consistently around 200 not having a meter and being on pills for five years (misdiagnosed as a type 2) and so I have some complications. But now that my A1c has been in the 5's over the past few years due to my diligent diet and daily excericse, endo could have given me a "Good work. You go girl!" But nothing came.

3. When I gave endo a sheet on which to record my A1c result and send to the organization for which I do peer-mentoring work, endo took the sheet, glanced at it, said "I'll send it" and put the sheet in endo's in-box. Not a word. Not a, "How nice (great, wonderful, amazing, selfless, well one can dream) you do this work."

I think it’s imperative when treating diabetes, a chonic illness that relies on behavior change, for health care providers to also be sources of support as well as guidance -- primary engines of unleashing patients' motivation. Wouldn't it make a difference to you to come out of your doctor’s office having been told you're doing great, or if not, that you'll get there? Feeling validated for all the hard work you do? Feeling relieved knowing you have a partner across the desk who sees you? I know these things make a difference: They impact our attitude, resourcefulness and commitment.

Unfortunately, I am not entirely surprised how our session went. Medical training emphasizes illness not patients and does not offer skills training in coaching, sensitivity, getting the context of a patient's life or deeply listening to patients. Discussing this with a friend who's a diabetes educator she confirmed this citing the "human-centered" approach of most nurses and the "clinical-centered" approach of most physicians.  

As I left the building, I also thought back to a piece of information I received at the end of the American Association of Diabetes Educators conference the beginning of this month. I had my book, "The ABC of Loving Yourself with Diabetes" in their bookstore. Last year the book flew off the shelves and not one remained. This year not one sold. The bookstore manager told me this:

"It’s the economy, less discretionary personal income and cuts in reimbursing purchases. So this year the bulk of the bookstore purchases were really heavy on clinical and accrediting DSME/T programs.  None of the teaching tools that usually sell out sold as well this year as in the past two years and other titles comparable to your ABCs did not sell well/at all either."  

So here's the conundrum: We need patients to change their behavior to better manage diabetes. Yet at the annual conference for diabetes educators what got reimbursed was clinical-related. Why is it so hard to see that without the tools that help motivate, encourage and support patients, behaviors will not change? Further, and studies document this, A1cs will not and are not going down and complications continue that can be avoided. 

The score card for my new endo:

Wait time:               30 minutes

Time spent in visit: 1 hour 

Manner:                   Pleasant and respectful

My Questions:         Listened to and answered

Relationship:           Not fostered. I was not asked: What are your goals?      

                                What's important to you? What are you successful at 

                                doing? What’s hard for you? 

Close:                      Clinical. I was told to fax my blood sugar numbers every

                                week yet not told if I had any concerns, worries or 

                                questions while changing my regimen to call or email the

                                doctor or office.

Score:   6.75 out of 10.

Pros -   Thorough, respectful, spends time.

Cons -  Almost exclusively disease-based, lacking in relationship-based.

One of the most surprising elements in the book, "How Doctors Think" by Jerome Groopman, M.D. is right at the start when Groopman says most doctors interrupt their patients within the first 18 seconds. 

A few days ago I went to New Jersey to present diabetes materials at a minor league baseball stadium that was also featuring a small health fair. Funny to see our little table against a backdrop of every unhealthy fast food available, but let's not go there.

While I talked with a number of people I remember one particular woman who stopped by the table. She was hesitant at first, tentatively looking over what was on the table. Her hesitation and Pacific Islander look immediately made me think she probably wasn't that educated about diabetes. Yet when I began to ask her about her blood sugar and A1c, wow, she knew her stuff. She told me about her 6.4% A1c and how she want's to get it a little lower, she told me what she eats and where she can do better and she told me about her last conversation with her doctor, turning her shy smile downward. Hearing her A1c, without thinking I stuck out my arm and shook her hand saying, "Congratulations! You're doing a wonderful job!" She grinned, she glowed, her smile lifted and spread from ear to ear going right up into her eyes. "Keep up the good work!" I said as she walked away waving and smiling, smiling and waving and thanking me. 

Right before my eyes I saw the affect of congratulating a patient on her hard work. Something I fear not nearly enough doctors do. And I know damn well she's going to work even harder to get that A1c where she wants it because someone acknowledged her and her efforts. More and more I am convinced patients will do better if we acknowledge and praise, congratulate, encourage and inspire them.

In a Wall Street Journal article, "The Importance of Trying to Be a Good Patient" by Laura Landro, Landro cites medical educator and physician groups that are training doctors to conduct more sensitive interviews, recommending doctors find ways to praise patients for their competencies and express sympathy with how frustrated patients may feel. John Prescott, chief academic officer at the Association of American Medical Colleges, reports more and more communication training programs are trying to get doctors to step back and say, "What's going wrong with this discussion and how can I change that?" And, the authors of "Breaking the Cycle" recommend doctors let patients speak uninterrupted for three minutes and ask open-ended questions. We hark back to where I began.

As my sojourn out to New Jersey came to an end, the driver of my ride turned to me as we approached my neighborhood saying, "I heard you talking about diabetes..." (I had been on the phone in the car). I explained to him what I do and he began to tell me about his father who died of diabetes and his brother who is having a terrible time with it. And how he and his wife are concerned because they're both overweight. 

I listened, answered his questions, encouraged him and spent an extra five minutes in the car in front of my building to give him information and a soft place to speak. When I reached for the car door handle to let myself out he reached for my hand, shook it and thanked me, wishing me the best day anyone ever has. I feel now as though it was kismet that I met the two people whom I know I impacted. I imagine they feel the same about meeting me.

I live very near a coffee shop called, "Lonelyville." I pass it on my morning walk. I always think what an odd name it is for a coffee shop. After all, the people sitting there chatting in groups of two and three and the ones on their own bent over their laptops are all there precisely to leave their lonely selves out the door, and feel unalone. 

When diabetes patients are surveyed about the challenges of living with diabetes, loneliness is always at or near the top of the list. Living with chronic illness is a lonely affair, whereas short term illness not so much. For instance, break your arm and it will mend in a few weeks or months: You know the experience will end. That allows you to get lost in, and commune about, your poor arm: "Hey there, buddy, what happened to you?" people ask and you get to tell your tale of woe or anecdote. You can show off your cast, people sign it with endearments, and you complain about how itchy your arm is and people commiserate, "Oh, poor baby." And even if you feel lonely for a while, it will end and your arm will mend.

Diabetes doesn't end. And for most of us there's no outward appearance of it, nor how hard you work at managing it. I was out to dinner this week two nights in a row. The first night my husband and I were meeting an acquaintance of his and his new girlfriend. When the conversation turned to my work, she said brightly, "My brother in law has diabetes!" Deducing he had type 1 and had gotten it recently, I asked, "How's he doing?" She said, "He's doing really great." Her enthusiasm let me know that she really had no idea what he's living with. My husband must have felt similarly for he began to tell them what my typical day looks like: Pricking my finger up to ten times a day, calculating carbs at each meal, constant injections, all the daily planning and organization and on and on, and on. Their eyes widened just getting this small insight. And, I thought listening to my guy, Wow, look at how much I do in addition to my "normal" life! Yet I can't allow myself to think of it as more than "normal life" or it would be too overwhelming, or make me feel sorry for myself, and that would impede my every effort. 

The next night we dined with a friend and met her beau. When she and I both took out our Apidra to shoot up for dinner, hers was in a pen and mine in a vial. The beau looked mystified and asked about the difference. A little more conversation told me he didn't know much at all about managing diabetes. Whether my friend chooses not to share much with him or he's not that interested, I don't know, but I wondered, isn't that a lonely place for her?  

At some level diabetes just is a lonely place some of the time. I'm sure this is true of any long-term illness or grief experience. But I'm not drawing any comparisons here, only remarking on an essential reality of living with diabetes. And, even though I work in diabetes, know a multitude of patients and diabetes educators, have an unimaginably supportive husband, diabetes just is often a lonely affair. My loneliness lessens in those moments when I talk with my friends who have diabetes because diabetes is always part of our conversation, even when it's just sitting there beside us unspoken.

So really, all those blog posts that went out from the diabetes bloggers at the Roche social summit after we returned (a few posts ago), all those shouts while we were on site of, "Gosh, it's so great to finally meet you!" or "We ought to do this on a regular basis!" or "I couldn't wait to get here!" All the uncontained joy and bonding and merely sharing the same air and recognizing this complex dance we do every day with all its machinations and emotions, well, it was all about for a few moments not feeling so alone.