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Helping Clinicians Understand Patient Needs: a research study

August 28, 2013

Some PhD over at Université de Laval is doing a study on the use of social media to help diabetes-related clinicians understand patients’ needs. I’m all about that stuff. To participate, PWDs are invited to create some piece of social media expressing what they wish health care professionals knew.

Naturally I could say a lot about this, but I decided to narrow it down to three little things. Here they are.

Three Things I Wish HCPs Knew

1) This could be you.
Simple thing, but I just want everyone to realize that, not just medical professionals. We all have the capacity for illness. I was a person without diabetes before I became a person with diabetes. Just something I wish people would deeply empathize about. Especially those who provide treatment.

2) There are other things going on in my life besides diabetes.
Diabetes is one of my many responsibilities. There are months where I’ve prioritized my diabetes above all else – that means I adjust my work schedule so that I get my morning workout, I cut out stressful situations in order to reduce spikes, I attend to my diet with saintly precision. Sometimes I have to prioritize other things. If my A1Cs have crept up, it could be because, this month, work had to come first. Or I’ve been travelling a lot, seeing family and attending conferences. Or I’ve been going through a difficult time emotionally and food choices and stress levels have been affected. Diabetes can’t always come first, all the time.
Last time I was at the endo, I was congratulated on having an A1C of 7.2. I told him that I was honestly a bit disappointed – that it was like getting an 89.4 on an exam, missing the “A+ zone” by a frustratingly slim margin. He responded by saying that there are few exams in our lives that we have to take every three months for the rest of our lives, so to cut myself some slack if I can’t ace the test every single time. He’s right: there will be high seasons and low seasons in diabetes management, as there are in all of the natural world. I wish other HCPs had this attitude about non-optimal blood sugars. This endo gets it cuz he’s Type 1 himself.

 3) It’s not weird that I know my diagnosis date. 
This is a small thing, but it irks me. It happens a lot: a random medical professional is surveying me on various things diabetes- and non-diabetes-related. They ask when I was diagnosed with diabetes, so I tell them May 13-14 2010. Then they chuckle or comment, “wow, you know the actual DATE?”

Well-intentioned though it may be, this surprised reaction has felt shaming, in mild but very tangible ways.  Diabetes is a big deal okay? A life-changer. People rarely forget their wedding anniversary, or the birth dates of their children. Its the other diabetics and caregivers/supporters who know, like the back of their hands, the significance of a diaversary. I wish medical professionals weren’t so surprised that I know my diagnosis date by memory. Truth is, not a day goes by when I don’t remember it. Maybe if I had more spaces to talk about how painful it was, I wouldn’t feel so protective of it.

It always feels important, whenever I provide critical opinions on diabetes HCPs, to express what quality care I have received from the two endo clinics I have attended, as well as other HCPs met along the way (at DYF, CIM…). Experiences of caring, empathetic, encouraging, and informed clinicians far outweigh those of misinformed, insensitive, douchey ones. A few of my attending HCPs subscribe to this blog, which speaks volumes about their commitment to understanding patient experiences. Y’all are heros. Thanks for standing by me during the difficult times, and celebrating with me during the small triumphs.

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