Tag Archives: Twitter

#LanguageMatters – #LanguageEvolves

I’ve been following a conversation on Twitter for the last few days. Mostly, I’ve been following it because I was tagged in the original post, along with a few others from the Diabetes Online Community. The original post covered a familiar theme, and it went something like this:
Do you prefer to be called a “Person With Diabetes” or “Diabetic”?
There were a ton of responses, and there still are, even today. But not from me.

Yes, I prefer the term Person with Diabetes. If you prefer something else, okay with me. If you want to talk with me about that one-on-one for a while, that’s fine too.

But I am so over discussing the PWD versus diabetic thing. I also can’t believe I just said I am so over something.

Some version of this same question comes up on my Twitter and Facebook feeds at least once per month, sometimes more. It’s been asked and answered and gone through so many times that further discussion on the topic just seems like white noise to me.

Can we all agree that the preference on this subject lies with the actual person with diabetes? And that the health care professional, co-worker, or family member should respect that person’s preference? Good… now, let’s move on.

Can we all agree that #LanguageMatters, but also that #LanguageEvolves? Or at least that it should, anyway?

What’s the next big thing to discuss? What’s really important to you right now? What kind of language should we be using to help each other? Who remains to be educated about patient-focused language in health care?

If you’re newly diagnosed, and a chronic condition isn’t something you’ve had to get a grip on yet, I get it. In that case, it’s okay to ask about preferences, and about why the words we all use can make such a difference.

For me, however, the discussion of language has moved far beyond that. I can see that language in diabetes, and in health care in general, will continue to have a big impact on our lives. It must. Let’s move the discussion forward, because there is so much more to define. There are so many more to educate.

Now that we all agree that #LanguageMatters— let’s start to discuss how to evolve our conversations to cover more than just the descriptions of ourselves.


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.

Join us for #WDDChat16!

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

24 hour #WDDChat16 Twitter Chat November 14!
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.
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.

To share or not to share.

I’ve seen, heard, and read discussions lately regarding how much, if any, personal information we all like to give out online. The questions are many and varied: Do I share personal information? Personal information about family members? What about photographs? Do I want my medical team reading my blog? Or even commenting? What about company representatives from pharmaceutical and medical technology firms?

To share or not to share… That is the question. The answer is really up to you. It’s an individual decision. The right thing to do is what’s right for you. For this post, I’m going to give a little detail about sharing online, and what I share or won’t share online. Let’s take the questions above one or two at a time.
Do I share personal information? Personal information about family members?

I do share some personal information. I’m 51 years old, I live in Baltimore, I have a wife and a niece who live in the same house with me. When I have stubborn high blood glucose levels, or nasty low BGs, you can read about that too. I’ve shared details of bike rides, recipes, and my participation in a clinical trial.

But I haven’t told you everything about me, and I probably never will. There are limits to what I have chosen to talk about. Those limits have changed over time, as I’ve gotten more comfortable with what I’m letting you know, and less afraid that you know it. It seems sensible to me to be as secretive as possible at the beginning of your online story. You can always give more detail later. But once you let the cat out of the bag, so to speak, you can’t put it back in. For a long time, Maureen was just referred to as The Great Spousal Unit and Rachel was just The Live-In Niece. When I finally used their names in blog posts, I did so because I was comfortable with it… Not because I felt I needed to do so to tell a story. Also, and this is important: When I’ve talked about anyone from my personal life, I have either received permission to use their names and details of our interactions (or they were public figures already), or I have not referred to them at all. That includes my niece and my spouse.
What about photographs?

If you haven’t already, do this right now: Turn off the geotagging on your photo device. Now.

Geotagging is a way that digital photos can store, in laymen’s terms, GPS-type (metadata) information on where the photograph was taken. If the geotagging feature on your digital photo device is on, and you take a photo of your child at the pool rocking their OmniPod, and you upload it to Twitter, Facebook, Instagram, etc., people with the skills to find the geotagging can find exactly where that photo was taken. Most digital photo devices, including iPhones and iPads (sorry, I don’t know about Android or Samsung) come with the geotagging feature on as a default setting.

I love to take photos, and I love to post them online. But the geotagging is off on my pocket camera. I can’t imagine a single reason (unless I’m lost in the wilderness with cell service—and I don’t have a smart phone), why I would want to tell everyone, including potential thieves, stalkers, etc. where I am and what I’m doing. Okay, I probably won’t ever have to worry about stalkers. But you get my point, right? I don’t want to scare you. The photos are great. But don’t share the latitude and longitude of your location in the process. Want to know more? A simple Google search on “geotagging” will provide explanations, examples of geotagging used for sinister purposes, and tips on how to disable the geotagging on your device.
Do I want my medical team reading my blog? Or even commenting?

When I read my first Diabetes blog (for the record, it was textingmypancreas.com), I was overwhelmed that someone else existed who had the same experiences I had. Then almost immediately, I got jazzed up about starting my own D-blog.

Then reality set in. I’ve written before. Mostly for broadcast (news, and a lot of radio commercials), and the occasional internal company e-mail or web page. Almost always, people have wanted to edit what I write, sometimes even to the point of insisting on grammatical or spelling errors in the process (“change ‘their’ to ‘there’, and capitalize the T” is my favorite example). These people were paying me, so they had the right to ask for changes that suited them, though I draw the line at mistakes like the one above. At any rate, I really started to get uncomfortable with the idea of putting something out there again and having it whacked by readers, or worse, my employers (whom I generally do not write for). As a result, I waited for many months while I mulled over whether to go online with my story. Of course, I finally did decide to start a D-blog, and I did so by getting comfortable with a couple of notions.

One: This is my space. If you don’t like what I write, you have the right to read something else, or start your own blog. I’m not above making mistakes, and I hope that when I do, I am contrite and not bitter about reversing my viewpoint or my wording. But I’m not going to add an apostrophe to every word that ends with an S (mistake intended, in case you’re wondering).

Two: If I’m posting something on the internet, I need to understand, and be comfortable with, the fact that anyone can read it. And comment on it. Yes, my endocrinologist reads my blog. She doesn’t follow it, she’s never left a comment, and we don’t discuss it at length. But it is often an additional part of our conversation during my appointment. An example:

Dr. P: “I read about your gluten free week. How did you like that?”
Me: “It was great… really gave me an insight into the difficulties Celiacs must face when they’re diagnosed.”
Dr. P: “Are you still eating gluten free?”
Me: “Ummm…. No. But maybe I should? Would I have to adjust my basal rates?”

I did have an instance where I described a not-too-good experience related to my diabetes, and I received an e-mail about it (not from Dr. P). That e-mail made me very uncomfortable. But that feeling soon faded, as soon as I realized that the e-mail was sent out of concern for my welfare, and not meant to scold me. What I’m saying is that the discussion goes both ways. If my story is public, I need to allow for and even encourage feedback. And support anyone’s right to say anything they want about it, as long as it’s not hurting anyone.
What about company representatives from pharmaceutical and medical technology firms?

See above for my feelings on that. If we post it publicly, anyone can read or comment. But let’s face it: They’re probably out there reading our posts. Not all posts, of course. But many firms equip themselves with software that will find mention of their name or products when it’s used online. That includes Twitter. So if you’re posting a review of a new meter or CGM or insulin, and you use the company or product name, they may take a look.

I’ve never received comments directly from company representatives. But I’ve received an e-mail from an author after a book review, and a PR rep from a pharmaceutical firm after posting about their product and research. These e-mails were sent almost certainly because when I wrote about these things, I reached out to the entities themselves to let them know I was posting about their product. I wasn’t going to change what I wrote to make them happy, but I thought a heads-up on a post featuring them would be the decent thing to do.
Over the last year and a half, I’ve shared a lot about my life and what I’m up to at a given time. I’ve done it here, certainly, but I’ve also shared a lot via Twitter and Facebook. I’ve done so at an increasing, yet careful level of detail about who I am, who I interact with, and how I interact. I can’t really give advice on what you should do regarding privacy… I’m not qualified. But if I did give advice (you knew I was going there, right?), I would say: Be safe, think things through as much as possible, and try to be fair. Ask questions, get advice if you’re not sure. Try to take a long-term view of things. Will my post still be worthwhile ten years from now? And don’t be afraid. The rules of online interaction are being written while we speak. And they will be rewritten again. Don’t be afraid of the rules, but be aware of them. Your story is worth telling, no matter how you tell it.

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