NYT Article: "Learning from Our Patients"

New York Times

Friday, March 23, 2012

by PAULINE W. CHEN, M.D., Columnist

Several years ago, I was invited to give a lecture to a group of patients who had received organ transplants at the hospital where I was working. The evening started well — patients I had cared for greeted me warmly, and everyone seemed interested in the talk I had prepared. But as soon as I was finished, the audience started asking questions, and I began to feel a creeping sense of doubt about my performance.

While I was able to reel off statistics on the latest treatments and medications, I found I had little to offer when it came to issues most pressing to them. I wasn’t sure of the best way to organize and remember the dozens of medications they were required to take. I didn’t know the most efficient way for them to schedule follow-up visits with me or my colleagues. I had no suggestions other than more pills for dealing with the nausea induced by their anti-rejection drugs. And I could only listen, speechless, to stories about co-workers who continued to discriminate against them by treating them like “sick people.”

I watched as the audience spontaneously broke out into smaller groups, people’s faces lighting up as they recognized their own travails in the stories of others.

The event organizer, a transplant patient herself who regularly coordinated lectures like this, approached me. To my surprise, instead of being upset with me, she bubbled over with praise.

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Wow, this article speaks to directly what we experience on this site! One of the reasons I really like my current endo is because she doesn't pretend to have all the answers. In fact, she once asked ME for advice about advising another T1 patient who wanted to get involved in distance running. It was a mind-blowing experience to walk her through exactly how I handle my pump, and basal rates, and other issues during endurance running events. After talking me with me she said something like, "Well, I guess I won't tell them that what they are trying to do is impossible, because you've managed to do it dozens of times!"

I have always said I've learned way more from this site than I have ever learned from my endo. The first place I turn to when I need advice in D management isn't my endo, but rather the online T1D community. Not only is this online community so supportive, but the collective experience of other T1D folks is BEYOND invaluable.

I totally agree. And I admire the writer of that article from coming down from the "I went to Medical School pedestal" and allowing her patients to learn from each other. The only one time I saw an endo was when I lived in Guatemala and when I showed her Using Insulin she wanted to know if it was translated into Spanish so she could share it with her patients (unfortunately it isn't). She said she wished all her patients were as proactive as me.

I'm in the process of trying to start a Type 1 Women's Group where I live now like the one I started in the Bay Area. The nearest chapter of JDRF is 3 1/2 hours away in Sacramento so I'm going to make a flyer and send it to endos in the area. I hope they are open to it, and see it as a valuable resource for their patients.

Thanks for posting this article, Emily.

MyBustedPancreas said it well about how helpful TuDiabetes is for so many!

Thank you again to those of you who keep the site running, and to all who post here to share their experience and to help the rest of us!

Marty1492

“What you’ve done tonight is to help each of these people begin talking with someone who has been through the exact same experience,” she said. She looked out at the audience and smiled. “This,” she said, pointing to the clusters of conversations, “means more than you realize.”
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Exactly. I can't possibly thank everyone behind the conception and operation of TuDiabetes enough. By creating and maintaining this site, you have given me hope, inspiration, support, hard-core diabetes management information, strategies and direction that I NEVER would have been able to pull together all by myself.

Who can put a price on how many you've helped, how much suffering you've alleviated, how many families and friends of diabetics you have indirectly comforted and reassured?

The ripples go all over the world, too, with members and readers from India, South America, Australia, etc.

Thank you, thank you, thank you.