Monday, August 24, 2015

The (mis)Adventures of Social Media and Diabetes

According to the definition of social media:
forms of electronic communication (as Web sites for social networking and microblogging) through which users create online communities to share information, ideas, personal messages, and other content (as videos)

With social media we are in charge of what we post.  It's all up to us, it's all in our control. What's not in our control is what and how people respond.  Just like in life, where we have no control over how people will react to something we say; social media is the same.
The other aspect is that we all come to the table with different perspectives.  I write and post from my experiences and you read and react based on your experiences.  Most of the time we're on the same page,  but what happens when we're not and someone posts something that's out of line, or completely wrong, or just rude?  If it it was a conversation at the dinner table it might not have gone awry due to tone and inflection, and also a natural path of conversation.  On social media we usually post snippets and we don't provide the whole background as to what got us to that snippet. 

At the dinner table we have the opportunity to explain, and probe and ask questions, before jumping to conclusions. Why don't more of us do that on social media instead of jumping to wrong conclusions? Is it because it's viewed as "just a post on Facebook?"  I'm not sure. 

Everyone manages their social media their own way.  Some people post only about their kids.  Some only post about sports.  Some post everything.  Some post nothing at all.  Over the years I've posted all kinds of things:  snow, cat transports, commuter train issues, fundraising events, gluten free adventures, travel.  I've also used it as a place to vent about an issue; though rarely as a place for advice.  For example "After  seeing the doctor today, I have a new diagnosis of plantar fasciitis"  95% of the posts told me how to cure it.  Even after I commented multiple times that I have a doctor and a plan.  I know, people want to help. I'm the same way, I immediately go into problem solving mode. But not every post needs an answer, or is even asking for advice.   In my head I thought by stating I had already been to the doctor would signal I wasn't asking for advice.  That would have been "Does anyone have any suggestions on how to treat plantar fasciitis?"   

After attending #MasterLab in July I have turned most of my Twitter and Facebook posts about diabetes.  I feel that the more I share about life with it, perhaps the more people will learn and that  there's a lot more to it than insulin and diet coke.  The more engaged I am, the better I feel about having diabetes.  If I could find a job dealing with any aspect of diabetes I'd take it in a heartbeat.   

I posted something seemingly innocuous on Facebook the other day, and got an earful in one response.

My original post:
Going on 5 nights on really bad sleep. Hoping the Sandman helps out tonight. My thoughts are somewhat scattered. Could be why I think doing the JDRF Ride next year is a good idea.

 wink emoticon
(I should know better than to post about not sleeping; as people will want to solve that problem for me.)

Most of the responses were fine,  until this one:

Maybe try to stop thinking about your diabetes so much. I am all for advocacy, awareness and good control but focusing on it 24/7 can not be healthy mentally. Your posts suggest you think about diabetes all the time. It certainly can't be ignored but don't let diabetes dominate your life, as you know and have seen there is a whole big world out there. Don't let the diabetes win by taking up all of your precious time. Focusing every day on a frustrating, scary, unpredictable disease would send me over the edge. Did you ever think about taking a day off....not from testing and the control aspect but from all the rest of it? Everyone needs a break sometime and maybe it will help you sleep better.

I was outraged when I saw this.  I came close to  deleting this post and unfriending this person. At first I was going to respond right away, but I knew better.  Then I wasn't going to respond at all. But I did respond hours later:

I have to admit when I first read this I was a bit angry, for blaming my sleepless nights on dealing TOO much with my diabetes. Then I realized your comments were out of concern, since we've not had the chance to sit down and chat about what I'm doing and why. I'd love to at some point though! .My rough nights don't have anything to do with diabetes - well one night did since I was low several times. The more I do, the more I help people, the more involved I am, the better I sleep. I love that people have been reaching out to me to help with all kinds of things. If I could find a paying job in the realm of diabetes I'd do it in a heart beat. It may only make sense to me, but there's where we are. If you have any questions/concerns feel free to send me a message so we can chat more.

Yes, it's true.  I think about diabetes all the time. For me just doing the insulin and blood sugar testing isn't enough.  I have gone through phases where I did the bare minimum and didn't talk about it or deal with it.  That didn't help me at all.  It impacts everything I do on some level and I want to do everything I can to help find a cure: help  people to realize just how frustrating & scary this disease is.

The rewarding thing, the thing that keeps me going is that people have started to come to me with diabetes related matters.  Some interactions have been simply to say thanks for posting. Some have been questions about how to help someone who needs supplies and doesn't have insurance.  Some have been about Camp Nejeda. Some have been contacts for newly diagnosed,   I love it. Seriously. Keep it coming!

The long of the short is please instead of first jumping to conclusions, ask a few questions.  I'd have loved it if this person instead of lecturing me on changing something they didn't understand instead said "is something troubling you this week?"  The answer to that question would have been "My husband has been traveling this week and I don't sleep well when he's away"  Granted I could have posted that first, but hindsight is 20/20.

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