Category Archives: Social Media

How do you talk with loved ones about diabetes?

Relationships. We’ve all got ’em, of one kind or another. Parent-child, siblings, significant others, Friends, Romans, Countrymen. And when it comes to diabetes, communicating with the ones closest to us is not as straightforward as it may seem on the surface.

Let me ask you: Have you ever held something back from a loved one, or if your loved one lives with diabetes, have they ever held something back from you? Maybe what was conveyed was not the truth, the whole truth, and nothing but the truth. Maybe a detail was left out here or there.

Hey, you’re not alone. I’ve done it too, for differing reasons. I’ve left out details of a really bad low I had when I was traveling by myself. If my blood sugar was 65 mg/dL before lunch, maybe I said it was 95 mg/dL, even though the 95 was actually an hour and a half ago.

You might not know this, but that’s really hard for me to do. I tend to overshare, especially about my diabetes. The fact that I’ve not shared everything is a sign that I’ve taught myself to when to share and when not to share with the one person I should be willing to share anything with.

Excuse me while I pause for a moment of guilty reflection…

I worry sometimes that this means I’ve given up on getting The Great Spousal Unit to understand certain aspects of my diabetes. I’m sure there’s also an element of “I don’t want to worry her too much”, but let’s focus on the understanding right now because I want to ask:

How do you do it?

How do you decide what is worth sharing, what should be kept to yourself, what is important for your loved ones to know and not to know?

Do you ever get burned out talking about another high or low, another bad pump site, another failed CGM sensor?

What’s the dividing line between Tell and Don’t Tell?

Sure, if it’s important for Maureen to know so she can act on my behalf when I can’t speak for myself, I have to tell her. If it’s something that happened and she’s no worse off for not knowing about it, it’s probably okay to keep it to myself.

But there’s a lot of gray area in between there. And I’ve been doing a lot of personal examination lately to try and determine if I need to revamp my communication strategy with those closest to me.

It’s easy to get complacent when it comes to sharing, what we share, and how we share it. It’s easy to believe we’re sharing exactly the right amount at the right time, with the right person. But every once in a while, it’s okay to do some self-examination and reconsider how we’re talking to the people who mean the most to us.

We’re going to be covering this very topic tonight at 9:00 ET(US) during the weekly DSMA Twitter Chat. If you’d like to talk about it, follow the @DiabetesSocMed Twitter account and look for and use the #DSMA hashtag.

Join us, and let’s get a handle on this communication thing.

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The Facebook Group phenomenon.

I’ve been added to about seven different Facebook groups lately (no, wait– it’s actually eight). All are diabetes or health care advocacy related. Is it me, or is this becoming a thing?

Sometimes, it’s because I’m attending or have attended a conference, and the organizers created a FB group for it. Others have been due to something common that the group’s creator wants to share and have shared within their group.

When I’m added to a group, I get a little imposter syndrome, like I do with nearly everything else. Why do they want me in their group? But I get over it kinda quickly. Then I’m left with: do I participate, lurk, or ignore it altogether?

I’m a Facebook user and have been for years, but I think it’s safe to say that I consume a lot more content than I produce. So already, I’m mostly on the lurking side.

Not that I’m shy online. But I’m careful about my online (and offline) reputation, and that makes me careful about saturating the internet with things that I might be embarrassed about sharing in years to come. So I err on the side of caution.

Plus, I look at FB groups with the same lens as I look at individual FB users… all of them are different. They have different focuses, and they appeal to different constituencies. Nothing wrong with that. I see that as something that makes the overall Facebook community better.

But when I consider posting to a FB group, I take into account the things that make that group unique. And with so many different groups covering so many different topics, I feel like posting to each one would mean I’d have to turn on a different personality each time I post to another group’s feed. That’s a lot of work for something that’s supposed to be fun. I just want to be me… be authentic.

I also have to manage my settings, every time I’m added to a group. Do I want notifications? Which notifications? Do I want to add the group as a favorite? Do I want to leave the group entirely? That’s extra work too.

I like being a part of these groups. I want to hear what people have to say about a topic. Sometimes I learn something new. It’s always worth hearing another perspective on something that I have in common with the users in these groups. Once in a while, I have something important to say too.

However, I have a high regard for people, individual people that I can have a one-on-one connection with. And when half of my personal FB feed contains posts from users, and half are from groups, I don’t think it’s hyperbole to say that the Facebook Group phenomenon has reached its zenith (a zenith is a peak– really, I just wanted to use the words hyperbole and zenith in the same sentence). Or I need some new Facebook friends. Recommendations are welcome.

Nevertheless, keep creating those Facebook groups, people. It may not seem like I’m there all the time, but I’ll be reading. Good luck.

Disappointed.

That moment when someone who’s inspired you turns out to be a jerK? I experienced that this week.

There’s a doctor in Las Vegas, who goes by the moniker ZDoggMD online. He’s gotten a lot of notoriety over the years, been on cable television news, recorded videos, and basically, developed a significant social media following. I’m not going to go into too much detail… in my opinion, he doesn’t deserve any more help than he already has.

So why am I writing about him then? I think I need to get this off of my chest.

I saw Dr. Zubin Damania deliver the keynote address at the initial HealtheVoices Conference two years ago. I was inspired by how he seemed to take a different approach to health care, and how to deliver the important messages that patients needed to hear.

I’m a big fan of Turntable Health, the health care initiative he got off the ground in downtown Las Vegas with the help of Zappos CEO Tony Hsieh. After seeing Dr. Damania speak in 2015, I made an appointment to tour Turntable Health when I was in Vegas the following March. Unfortunately, I couldn’t get the story I wrote about my tour published; I couldn’t get my facts double checked by the staff there, and I didn’t feel it was right to publish something that might not be entirely accurate. But I was very impressed by Turntable Health, and by Dr. Z, as the staff there refers to him.

Fast forward to this week. Using his ZDogg online persona on Twitter and Instagram, he posted a photo designed to shame and guilt People With Diabetes. It was remarkably horrible. It was junior high school level crass.

Cue the immediate backlash from the diabetes community. Many advocates stepped forward to voice their disapproval. Reaction was swift, and at times, it was pretty intense. Which elicited responses from Dr. Z himself.

Later, he took to Facebook Live, along with a couple of friends (or employees or accolytes or something), and he tried to explain the posting. He went to great lengths to explain that he was only reposting an existing meme. Yeah, that makes it aaalll better.

He complained a lot about Type 1s and how they were overly sensitive, and how this post had nothing to do with them, and how it was really directed at Type 2s. At the end of the video, he deleted the post, and then mocked deleting the post, both at the end of the video and afterward in comments on the video.

It’s easy to get angry about behavior like this. It attempted to shame People With Diabetes… ALL People With Diabetes. It allowed people to laugh at those living with a chronic condition they will have to live with the rest of their lives. It gave voice to countless medical professionals who believe the message in his post is the proper way to treat People With Diabetes.

In addition to violating the sensitivities of everyone who believes in treating others with common decency, Dr. Damania violated two of the most important tenets of internet communication:

1. Consider carefully all the implications of what you’re posting, before you post.
It’s like salt in your stew: you can always add more, but it’s really hard to take any away.

2. You can almost never recover your reputation by complaining about the people you’ve already offended.
It’s the social media equivalent of kicking someone when they’re down. It confirms your status as the bully.

I’ve posted things I’ve had to take back. At one point or another, just about everyone does. In fact, two of the most difficult things for me are to apologize for posting something that bothered someone else; and to be happy for people who get to experience things I’ve always wanted to experience.

Those things are hard for me to do, but the difficulty I have with them is no excuse not to do them. In my case, I must express these things exactly when they will mean the most. Even when I’m not sure how sorry I am that I bothered someone, or I’m not sure how happy I am for someone else.

It’s not important how I feel about those things. It’s important how they feel about those things.

There are gray areas in reacting to social media backlash too. But what I’ve seen through this episode… from the original post, to the hurtful comments from others who chose to Do No Harm by becoming healthcare professionals, to leaving the post up and letting animosity boil until deleting the post toward the end of a less than sincere video rant… shows me that for Dr. Z, there is no gray area. He didn’t leave himself any.

If you know me, you know I’m the kind of person who tries to consider all sides of an issue before saying anything about it. I admit it… I was inspired by Dr. Z previously, and I wanted to believe he would act with compassion, if not empathy in this matter. I not only wanted to believe he would, I wanted him to act with compassion so I could believe in him again.

Which leads me to my final piece of social media wisdom: It’s okay to be unhappy. Bitterness? You own your bitterness yourself.

You have to live with your bitterness. You have to live with the cause of it. You can’t escape it without contrition.

Will I have more to say about this? Probably, in another form, in another venue. Truly, I am disappointed. I want to laud Dr. Damania, and I want to celebrate his successes. After this week, however, I find myself fearing for his patients, and fearing for the patients and acquaintances of those he has influenced.

Join us for #WDDChat16!

So, it’s November and all. You know what that means:

24 hour #WDDChat16 Twitter Chat November 14!
wddchat16
Let me be the first to remind you that Monday marks another World Diabetes Day, and among all the other happenings around the world, much of the world will be checking in to the diabetes talk on Twitter. Some people, like me, multiple times.

If you’re a seasoned veteran of the #DSMA chats, terrific. Consider this your friendly reminder. Just remember to use the #WDDChat16 hashtag for this special event. We’ll see you Monday.

If you’re not familiar with the Twitter discussion, or if it’s been a while and you don’t remember, here’s the deal: each hour of the chat will have a different topic, and will be moderated by a different host. I will be your moderator from 8:00 a.m. to 9:00 a.m. (EST in the USA). The topic: My Diabetes House. My Twitter handle: @StephenSType1

Each hour’s chat will include several questions asked by the moderator, and participants are encouraged to reply. And chat with other participants while they’re at it. For a list of the WDD hosts and topics, CLICK HERE.

If you’re new, don’t be discouraged. The #WDDChat16 chat will be a fun atmosphere that welcomes everyone living with and affected by diabetes, regardless of your type of diabetes, regardless of how long diabetes has been a part of your life. It really is the fastest hour of the week when the chat happens at its regular time on Wednesday nights from 9:00-10:00 (EST). On World Diabetes Day, the lively conversation will continue for 24 straight hours.

The moderators on Monday include some of my favorite People With Diabetes. If you don’t already, I encourage you to get to know them too. People like Christel Marchand Aprigliano, Anna Norton, Chelcie Rice, Kerri Morrone Sparling, Kelly Kunik, Chris Clement, and others. Over the years, I’ve seen participants from every continent except Antarctica.

Don’t have a Twitter account? No problem. Go to twitter.com and create yours in about 15 seconds.

To join the chats, follow the #WDDChat16 hashtag on Twitter, or use one of the several hashtag feed web sites that will link with your Twitter account. That way, everything in the chat just keeps flowing, and you also have a space on the same page to Tweet away yourself. I like to use this one: http://tchat.io/rooms/WDDChat16

Then just jump in and enjoy the conversation!

If you’re still not sure how this all works, CLICK HERE and send me an e-mail. I will help you get going or answer your questions.

This is truly one of my favorite things about November each year, and like other years (this is my 5th!), I hope you will join me during the 24 hour (including 8:00-9:00 a.m.) World Diabetes Day Twitter Chat sponsored by Diabetes Community Advocacy Foundation.

Special thanks to Cherise Shockley for coordinating the chat every year, and for her tireless efforts to bring our community together, one conversation at a time.

Talking about Cousin Spammy on DSMA tonight.

I’m not sure I can define diabetes spam exactly… but like Supreme Court Justice Potter Stewart once proclaimed regarding pornography, I know it when I see it.

We’re going to be talking diabetes spam on the DSMA Twitter Chat tonight. What does it look like to you? How does it make you feel? How do you handle it? And many more aspects of what spam does to our already overworked eyeballs.
SpamLunchbox
From ridiculous snake oil cures to workout ads that promise to “reduce diabetes” (ummmm… it’s still DIABETES), we’ll be riffing on what really bugs you regarding quack dietary supplements and what your co-worker heard on the TV last night. We’ll talk about what everyone is doing about the stupid e-mails they’re getting, and maybe a little about what we’d like to do about all these snake oil remedies and the people who tout them.

Diabetes spam is kind of like the stoner cousin at the family get-together. Eating all the non-carby good stuff you brought while leaving your aunt Ginny’s undercooked brussels sprouts for you on the buffet. Eyeing your significant other with a little too much gusto. Borrowing a fiver while promising to get it back to you next week, and finishing up with “We gotta hang out more often, cuz!”. Yeah, right. I’m not a kid anymore, cuuuzzz.

So catch up with me on Twitter tonight (all the details are below) and we’ll compare notes, laugh a little, and generally dis’ about cousin Spammy. He’s got it coming… let’s serve it up beginning at 9:00 eastern time in the USA.
 
 
Living with diabetes? Living with someone living with diabetes? Join us for talk, support, encouragement, empowerment, and more during the DSMA Twitter Chat every Wednesday night at 9:00 Eastern time (USA). Follow the @DiabetesSocMed Twitter handle and/or the #DSMA hashtag and join the conversation!
I also find this link via tChat helpful.

The DSMA Twitter Chat is sponsored by the Diabetes Community Advocacy Foundation, Cherise Shockley, Founder and CEO.
 

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