Category Archives: Social Media

Uncertain, but Hopeful. Vulnerable, but Resilient.

Make no mistake… there are reasons to be frightful as we near the end of the year. When it comes to diabetes, there is more than one reason to be mad, outraged.

I saw some of that in our #DSMA chat last night.

We talked about what 2018 has been like, what headlines grabbed our attention, and we made some predictions for 2019. Not everyone’s answers reflected hope and inspiration. In fact, nearly everyone, at one time or another, expressed disappointment, anger, or sadness.

But there was a lot of inspiration too. New jobs, excitement over meeting new diabetes friends at conferences, school successes, and a lot more. Seeing this helped reinforce something I’ve known, but have forgotten at times this year.

People With Diabetes are strong. We have more fortitude than even we ourselves could have imagined at diagnosis. We’ve overcome diagnosis, DKA, insurance denials, co-pays, hypoglycemia, stigma, discrimination, and a hundred other things that would try the soul of most healthy individuals.

We continue to pursue our goals, undaunted by doubters and uncooperative pancreases. We give our time and our money as if we had extra to give (truth: we don’t). We champion the causes we’re most connected to, and we champion the individuals that truly don’t have any extra time or money to give right now.

We educate, on a formal and informal basis. We learn constantly, formally and informally, because the nature of our condition and its care is constantly changing. We’re resilient, because what other choice do we have?

I might have forgotten some or all of that amidst all the craziness that 2018 has dished out. But Wednesday night reminded me that even though we’re vulnerable because of a failed organ, we’re certainly not finished yet. We’re still capable of great things.

And 2019 promises even more. Many of our participants in the chat talked about going beyond talk and plans, and moving toward real, concrete action on things like increased access to affordable insulin here in the USA. And more developments in closed loop technology. And more availability of real, meaningful support of those newly diagnosed.

I was also encouraged by how much everyone in our diabetes community is encouraged by others in our diabetes community. How much those human interactions, either online or in person, mean for our health and well-being. That benefit cannot be overstated.

Personally, I plan to continue some of the crusades started in this year and previous years. But I also plan to change a few things, just because I don’t want everything to be the same all the time. And I want to find more time to help and laugh with those in this community who mean the most to me.

Sure, we still have challenges. Diabetes itself challenges us every day. But we have hope. And a brain. And a heart. And courage. And empathy, which is what the last member of the group in The Wizard of Oz received before their part was edited out of the movie.

Okay, I was kidding about that last part, except the empathy. Empathy is important. And so are you. There is a lot for us to still worry about… we all know that. But we have each other. Let’s use our amplified voices for all the good we can, for us and for the ones who need us the most.

Holidays!

I just put the exclamation point on that headline for fun.

Let’s face it… the holidays can sometimes be less than fun. Families, things to do, gifts to buy (if we’re lucky). Also, if we’re unlucky, we have family and company and religious get-togethers, the diabetes police to deal with, and the stress that comes from focusing on blood sugar while we’re trying to focus on those we care about most this time of year.

So let’s talk about that. But let’s not just talk about this time of year… let’s talk about all the holidays.

I’ll be hosting the weekly #DSMA Twitter chat this Wednesday night. Let’s talk about all of the holidays that we celebrate through the year, and the ways they may or may not influence or be influenced by our diabetes.

The discussion will involve diabetes in some places, and in other places, just life, not specifically diabetes. Look at it as a chance to learn (or even ask) about holidays in other countries, or other cultures. Feel free to share what makes your favorite holidays great, from a diabetes and non-diabetes perspective.

Let’s take some of the stress out of, again, all the holidays, Wednesday night at 9:00 eastern time (US). To follow along, follow the @DiabetesSocMed Twitter handle and the #DSMA hashtag.

8 Things: Communicate wisely.

Let me just say from the outset… I doubt that many who actually need to read this will do so. Also, I’m not even going to try to top what Renza wrote, because it says so much of what I’m thinking too. Being kind is the best way to establish respect and maintain your own self-respect.

But for the sake of providing my own perspective on how to get along inside and outside of the diabetes community (and I can’t believe we’re talking about this again), here are 8 things I try to keep in mind when I engage with someone who holds a different point of view.

1. First, I almost always wait.

Why wait when your point of view is under attack and it seems like everyone else is responding and jumping into the fray?

There are lots of reasons to wait. Often, just waiting takes the air out of someone’s self-important balloon. By the time you respond, they don’t have as much energy left to disagree with you. Also, and I can’t stress this enough… waiting gives you time to form your words and consider how you’re going to respond, or if you’ll respond at all.

That doesn’t mean I’m doing nothing while I wait. It just means that I’m not responding yet. However, I may be writing a draft of what I want to say; or figuring out a strategy for responding that includes what I want to say and what I want to say to any potential responses to my initial response.

By the time I finally do respond, I almost always do so with a more measured, more powerful message.

2. But sometimes, you just have to let it go. Not everything, or everyone, deserves your response. Some opinions and the people who speak them need to exist in a vacuum all by themselves. Restraint is tough, but sometimes you have to go high when they go low, to quote Michelle Obama.

Also, I like the idea of Abraham Lincoln and the “hot letter”. When confronted with an attacker either inside or outside of government, Lincoln would sometimes write a letter detailing his exact thoughts in the moment. Often, he wouldn’t send them or even sign them. I believe they were catharsis in a way, and probably sometimes, a first draft of a more tactful response to a difficult situation. I’ve done this too.

3. Try to address the issue, not the person. When I was a retail manager, I used to tell my employees that despite what we’re told, the customer is not always right… but the customer should never be made to feel like it’s their fault they’re wrong. Even if it is.

As much as I can separate the issue from the person expressing their opinion, I try to do that. Hurt feelings over being wrong about an issue is something people can get over. Hurt feelings over personal attacks are a much bigger hurdle.

4. Find the dividing line. There’s a dividing line somewhere, between anger or disappointment, and just being bitter. I’m okay with acknowledging someone’s anger over an issue, or disappointment at being left out of a discussion. But if you’re bitter? You own that all by yourself pal, and you’ll have to live with it, because I’m not going to validate your bitterness by responding to it.

Sometimes it can be difficult to find that dividing line I mentioned, but the more you can separate anger or disappointment from bitterness, the more likely it is that you’ll wind up maintaining a decent amount of personal space between you and your critic. And you’ll be more likely to maintain the respect of and from a critic, as long as they don’t cross that line into bitterness.

A few other very important points I’d like to make:

5. Make sure you’re right. If you’re calling out a journalist for using the word “gadget” in a story on medical devices, you’d better make sure you haven’t used the same word in the same context on your blog or in Facebook posts. Nothing kills your argument faster than contradicting yourself.

6. It’s okay to let someone have the last word. I’ve often stated my point of view and told my counterpart that I will let them have the last word. That does two things: 1) It closes the conversation after they make their last point; and 2) It really makes them think hard about the last point they’re going to make, because they know I’m not paying attention after that.

Especially when they’re being bitter, sometimes the best way to handle a detractor is by letting them cry themselves to sleep, so to speak. The more they display bitterness, the more my lack of reaction shines a light on it.

7. Sometimes, it’s better to handle things personally. In other words, through an e-mail, or even one on one at a conference or meeting. That can be more difficult because it doesn’t offer the false high that comes with a swift social media response. Regardless, public displays of outrage are not always the best way to get your point across.

8. Forever is a long time. It’s forever, man. I have had difficult communications with individuals, even where they were being bitter, and ended them in ways that leaves the door open for reconciliation. Now we can at least have a decent conversation online again, even if I don’t agree with their point of view.

Say what you want to say. But if you’re going to set something on fire, make sure it’s worth torching. I speak from experience, and trust me, you don’t want to have to cross back over a bridge you’ve already burned.
 
 
I hope these are useful pointers for you as you continue to navigate the information superhighway. Remember that people are on the other end of what you post. People with feelings, with jobs they’d like to keep, with families to feed, and with reputations they’d like to keep intact.

Aren’t you the same?

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.

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.

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