Monday, May 13, 2013

Endo, Endo, Through My Window

Share and Don’t Share - Monday 5/13 Link List
Today's Prompt: Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one's daily life with diabetes? On the other hand, what do you hope they don't see?  (Thanks to Melissa Lee of Sweetly Voiced for this topic suggestion.) (Hey, that's me!)

Social media has provided people with diabetes today with an enormous network of support. We can tweet a disappointing blood sugar, insta a photo of a carb fest we're about to eat, or rant via Facebook about a conversation we cannot believe our dietitian had with us. Understandably, many are skittish about our health care practitioners (HCPs) eavesdropping on us in that safe, sacred space.

I believe, however, that HCPs have a place in social media. I love following the endocrinologists and nurses whom I follow through various outlets. I learn stuff. And I get a sense - especially from those who also have diabetes - that this is just as hard for them.

I am not afraid of my medical team. I am not afraid for them to know that this disease is incredibly challenging for me. I'll own up to weaknesses. I'll express dissatisfaction with a product or a change in regimen that one of my team suggested. And I don't feel I say anything that I wouldn't own in person. That's just how I am.

But that doesn't mean that I would want them to abuse my oversharing. I would not expect them to use my blogging as a how-to (or a how-not-to) to their other patients without asking me first. I would not want them berating me for something they saw me say online, but I would expect them to approach me with constructive criticism if they saw something and had suggestions that would help my care.

My team is extremely cautious about my online adventuring. They have told me that they worry that I might say something that will get me in trouble with an insulin manufacturer or a pump company and do not want to see me held liable for libel. I respect that. But it won't change me reporting what I run up against out here in the wild.

If I don't want something seen, I don't blog it. I didn't announce my second pregnancy on my blog until mid-second trimester even though I had planned to throw caution to the wind and really "tell all" the next time I got pregnant. I found myself guarded though - didn't want family to pry or worry about 'another' pregnancy with diabetes. I don't blog about private family drama. I don't write negatively about people in an identifiable way. Even the endocrinologist I didn't get along with received a somewhat tender and apologetic handling.

But what is it that I think HCPs need to see?

I hope that they see how much more we need than what they provide in an office visit 3-4 times per year. I hope they see that they should be directing us to social media - where we can get a 24/7 lifeline for a disease where every minute counts. A disease that is intricately tied up with depression, disordered eating, burnout, motivation, complicated feelings of success/failure, and social isolation. I need them to see that we're out here for 361 days a year when we don't have endocrinologist appointments and figure out how to help us in that space.


  1. Well said! Diabetes is 24/7, so it's nice to have support that is too. Plus when it takes a CDE over a day to get back to you when you have questions, I'd much rather ask for help from those who actually respond right away.

  2. Very true! The best resources aren't outlined in the tired old pamphlets sitting in a waiting room. The best resources aren't the lawyer-sanitized ones written by for-profit professionals, it's the dynamic, interactive nature of a community that is in the same boat and living with the same concerns.

  3. So very true! I cannot even express how being able to access other people's blogs and read about their experiences, good and bad, has helped me cope with this disease (particularly when I am having a tough time).

  4. I've never even thought about that libel possibility before! Not that I think it would happen, but it's interesting that *that's* what they are worried about.

  5. I have heard of Endo.s who reach out and look into the 361 days, like you mention. Those are the gems, only found far and in between. I really think it has so much to do with HIPPA laws. What can we do to change them? Seems like a LOT of work. ha.

    Thank you for sharing Melissa.

  6. I'd probably be nuts if there weren't all these nice, concerned, caring DOC people living in my computer.
    PS - the 15 minute thing is helping! (When I remember...)

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  8. You showed me the power of the DOC when I was first contemplating getting a pump. You didn't say I was stupid for not having one, and when I did decide you didn't push me to what you were using, but listened to what I was say. You have been a perfect DOC friend. You were the first person I told when I made that decision. Thousands of miles away, only seen via a computer, talked to via a phone. Yet friends none the less. Wish those endos knew what that was like for all of DOC'ers!

    love ya Melissa!


  9. Yes yes yes and yes!! And thank you so much for suggesting such a fantastic topic!!

  10. You are so right-they should be directing us to social media more. I have learned more from the DOC than 19 years of endo visits!