Tag Archives: Facebook

#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.

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.

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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