My 9 Rules for the DOC #DOCBurnout2015

DOCburnoutDayMany of us talk about the power of the Diabetes Online Community, a virtual entity that has grown organically over the past 10 (or so) years. If you’re looking for support, advice, experiences, kindred spirits or an answer at 3am, you can reach out through your keyboard and find someone almost immediately. We share ways to connect, communities that center around diabetes, and resources to make daily living a little easier.

But few of us talk openly about the underbelly of the Diabetes Online Community: the shaming, the bullying, the misconnects, and the frustrating attempts at feeling accepted. That’s why Diabetes Daily suggested that today, we share our thoughts and experiences using the hashtag #DOCBurnout2015 on social media. I’m hoping that we can stop the shaming and bullying within our own support system and help those who feel excluded rather than included.

My Experience

My experience is different than most when it comes to what we now call the DOC. My early forays into connecting with others through diabeticfeed, the podcast John and I started in 2005, put me in touch with some of today’s heavy hitters in the community: Kerri, Scott, Amy, Manny, Bennet, Kelly, Wil, and so many more – all who I’ve grown to love and think of as family. The community was young, small, and tight-knit – and reaching out to each other, while not easy, was gratifying.

As I’ve mentioned in other posts, my career and personal life shifted my focus away from the DOC for a number of years. I didn’t connect as much, didn’t do as much, and while I cared about the community, I wasn’t actively participating. When I decided to “come back” and be active, I wasn’t a newbie, but there were (are) a lot of people I didn’t know who had become integral threads in the fabric of the newer DOC. I was an “old newbie” and it was weird.

I was grateful to be welcomed back by many, but there was also an undercurrent of “Who the hell is this chick? Why the hell should we care who she is?” And rightfully so. As far as most people were concerned, I was like the kooky aunt in the attic that no one talked about anymore. “Ohhh… so you’re the Christel people talked about.” (To be fair, no one said “kooky aunt” outright, but I had a few interactions with people online and face-to-face that didn’t leave me with the warm fuzzies.)

Over time, that feeling has mostly dissipated, but wisps of discontent drift up occasionally online. It’s like every community: no one will be happy all the time. But I’m seeing a rising tide of discontent and I’m calling it out. It’s bullying. 

Bullying

  • Bullying a person in the diabetes online community over their choice of treatment plans or what type they have is unacceptable.
  • Bullying a person for giving their time and support to help others in the diabetes community is unacceptable.
  • Bullying a person for sharing correct medical information is unacceptable.
  • Bullying a person for having (or not having) medical insurance, medical devices, or access is unacceptable.
  • Bullying a person for making choices and telling them they’re stupid for making those choices is unacceptable.

I’m witnessing the bullying more and more online: Type 1 versus Type 2, LCHF versus paleo versus Dr. Bernstein versus “I’ll eat what I want,” pump versus MDI, Nightspot versus Share, “helicopter parents” versus T1 adults who were T1 kids… you name the discussion and there will be discourse and discontent.

Personal attacks are also unacceptable. I know of one individual who, without ever having met anyone in a particular diabetes FB group, was threatened with physical violence, suggestions made on how to make this person “pay.” I’ve been personally attacked in private messages on social media and I know of others who, simply by sharing their lives with diabetes openly, received emails that would horrify even the most hardened of hearts.

By now, I hope you’re thinking: “What the hell?!? Who does that?” (If not, please email me. Seriously. We need to talk.) And then I hope you’re asking yourself: “What can I do to ensure that I am helping and not harming the DOC?” (If not, please email me. See above.)

Here are my DOC Rules for Interacting with Other Human Beings:

  1. We are all human beings with emotions. We all bleed when we’re poked. (Some of us, literally. Hey – a reminder to change our lancets!) The words “stupid”, “ignorant”, “dumb”, or “idiot” should be banned in discussions within the community (even if you’re explaining an interaction with someone outside of the community (like a nurse or a doc or a stranger on the street).
  2. Think before you angry post. If you read something and you are angry and want to respond, do not bang out a response and hit send at the height of your anger. Walk away and then come back.
  3. Some people are new to the DOC. Be kind. They will ask questions that have been asked before. Help them find the information. (Know that employee in Home Depot who walks you over to the item you’ve been searching for in the wrong aisle? Be that person. Wearing an orange apron is optional.)
  4. Your diabetes is your diabetes (or your family member’s diabetes is your family member’s diabetes). If someone asks a question or is looking for support, answer the question and give support. Don’t be a jerk in your response. If you can’t NOT be a jerk, then move along and don’t respond at all.
  5. Share blogs and information you like – and that don’t give incorrect medical information or dangerous information. I love reading new blogs and learning about other people in the community – new ways of thinking about daily life with diabetes or new research that I want to share. (Hint: if the info has okra or cinnamon in it, keep scrolling….) If you find misinformation online in a group, notify the administrator and ask for its removal. It’s like the Smokey The Bear campaign: Only you can prevent bad information from spreading like wildfire.
  6. If you are bullied, walk away if you can as soon as possible. Do not engage, because sometimes, it’s exactly what that person wants: a reaction. I was always told that when children misbehave, it’s because they want attention: any attention, good or bad, is attention. If you react, then they got what they wanted. People will try to “hit and run” – send you a private message or an email, spewing their hate. Delete it. Block them. There will always be those who just can’t play nice.
  7. It is perfectly OK to step back if you’ve been hurt. It’s perfectly OK to apologize if you’ve said something mean and ask for forgiveness. Just don’t blame it on a low blood sugar. (Posting while low should be a term.)
  8. If you’re not connecting within the DOC, you may want to rethink your approach. Are you writing a blog and expecting people to flock to it and praise you, but no one knows it exists? Are you constantly posting negative comments in a group but not giving support or asking for opinions? Do you focus on one thing about diabetes and bang that drum every day in the same chat board? Do you gloat or act smug because your blood sugars are always in range and you never do anything wrong and tell everyone that when they share their experiences or ask for advice? Do you pick fights with other PWDs on Twitter or FB? Do you make fun of family members or others online who don’t have the knowledge about diabetes that you do? Take a step back and look at your interactions. Are you helping… or hurting others?
  9. Remember why you wanted to connect with the DOC in the first place. For me, it was simply this: I was alone. Reaching out to others who had the same chronic illness and learning from them helped me to be stronger, more resilient, more knowledgeable about diabetes. What’s your reason for wanting to connect? Keep that close to your heart as you connect with others.

Stepping Away

Sometimes you need to step away. It’s OK to step away from the DOC. I did, and I came back. Others have stepped away and are missed. Burnout is real.

Until there’s a cure, we’ll not going anywhere and we’re trying to keep our community uplifted and supportive. When you want to come back, we’ll be here… most of us with open arms. Those whose arms aren’t open?

Well…group hug for them, too. They probably need it the most.

Share your suggestions and thoughts about #DOCBurnout2015 at www.diabetesdaily.com and Diabetes Daily’s FB page.

 

0 comments
  1. GREAT post!!

  2. Christel, in many ways you are the best blogger in the DOC. That is my personal opinion. Those individuals who bully you may be jealous, because they don’t have your talent, so they strike out at you. I do not have your talent, and I am jealous, but I praise you instead of making rude comments. I was going to compose a diabetes burnout blog this morning, but now I do not have much enthusiasm for doing that. People will “like” my blog, but they will LOVE yours. Well, maybe not the bullies, but they don’t matter. I should have written and posted my blog before reading yours. LOL

    1. Richard, I adore you, because you have the wisdom of years of diabetes. I strive to be more like you and your daily attitude towards living with a chronic illness. And I’m so very grateful for your voice, which has inspired so many.

  3. Christel, I’ll confess that when you first posted about this project in the CGMITC group, I thought “Geesh, that’s awfully judgmental–our little bubble is just fine.” After reading your post, I have a better understanding of why this campaign is important. I’ve thought that parts of the DOC were mean from the very first time I tried to find a support group after diagnosis back in 2011. Now that our family is somewhat more open to the DOC, I can say that I agree with everything you’ve written here; I know our work, our efforts, and our “words” have often been judged, and that hurts. Your post serves as the perfect reminder (especially to me!) to be kinder than is necessary online. Thank you.

  4. I liked this so much, I came back and read it for a second time. There are many words of wisdom here. Next time I feel off center in my social media efforts, I’ll come back and read it again. Thanks.

  5. Christel, I have to say if I haven’t said it before Richard Vaughn is the smartest man I know. Because you are one of the most intelligent, brain and heart, witty, acerbic, learned, humane people/posters/bloggers in the DOC, and on the earth. I loved reading this as I love all your posts. When the SMUCK are you going to come to New York so we can have a group hug for two?

    1. I think the question should be… when are you coming down to Florida? 🙂

      1. Yes, it should be, but you know New Yorkers are very arrogant 😉

  6. As someone who has left the DOC, and has returned, but in a diminished capacity; I applaud you. I value the friendships I have encountered. I believe in your “rules”. Thank you for this post.

  7. Excellent post, and I particularly enjoyed reading your story about being both a veteran and a newbie in the DOC. Your burnout rules are all spot on. I find that a lot of the bullies out there are largely anonymous – no real name, profile picture or description shown. If they were doing it openly with a real name and face, they might think twice about it.

  8. Is it possible to feel bullied by the doctor’s nurse practitioner? My son’s appointments are always nerve racking and painfully stressful. The only reason I have stayed with the office is because of the amazing women that are at the front desk. So grateful for their kind way of managing our visits. The nurse practitioner was good at explaining the need for him to lower his a1c so that he could try for his license. Once my son did that at the needed number, the nurse said now you can’t get it because there are a couple of days that you only checked it three times. My son cried when we got out to the car. After that he pretty much gave up and had been so angry.

    1. It is absolutely possible.
      If this had happened to me, I would have been just as frustrated and angry as your son – and he absolutely has every right to be angry.
      I would encourage you to tell your son first and foremost that he is doing a great job meeting his goals and that the nurse practitioner was in the wrong for denying him the opportunity.
      I would also ask to speak with the doctor regarding this issue; moving the target AFTER he reaches the target is unacceptable and is demoralizing. The doctor needs to be aware of this tactic and then you need to have his doctor’s assurance that this will not happen again – and you can help to ensure that by only having an appointment with the doctor. (While the front desk staff is great for YOU, they are not the people who impact your son.) If he can’t see the doctor every time, then perhaps you need to let the front desk person know why you will need to be changing practices.
      It’s so difficult to speak up in appointments when you feel like you’ve been punished by a medical care professional. And it’s normal to feel like giving up after an appointment like that. Even if you/he didn’t speak up during the appointment, it’s not too late. You can contact the doctor – or write a letter to the doctor and the nurse practitioner. We spend most of our time managing this disease by ourselves; your medical care team should advise and support, not tear down.

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