Many 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 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 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:
- 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).
- 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.
- 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.)
- 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.
- 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.
- 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.
- 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.)
- 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?
- 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.
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.