Diabetes Blog – Happy-Medium.net

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 end’s 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.