Monday, June 2, 2014

Balancing Diabetes Definitions, Connections, and.... (So On)

This past weekend gave me a chance to attend a local diabetes conference put on by the JDRF Indiana chapter.

There's been a national JDRF dictate that these conferences all across the country be referred to as TypeOne Nation, so that's what this one was. It wasn't the first of its kind here, but since it's relatively small and new, the chapter's followed that directive. An estimated 200 people attended this year, I'm told.

Had a great time, because it's just the right size to be intimate but not overwhelming. And what I liked was that it didn't force you -- as some larger conferences by JDRF and others do -- to miss some great sessions because there's too many crammed into the exact same time slot and you just can't be in multiple places at once, or even look back to view them on video or online at a later time.


I was live-tweeting a bit from my personal @MHoskins2179 account, using the @JDRFIndiana account and #TypeOneNation hashtag in most of my tweets.

It was great to have Dr. Fran Kaufman (a California endo and chief medical officer at Medtronic Diabetes) there as the keynote speaker and also a presenter on D-tech and research. Hearing her talk about all that she's done in her now-5 years with MedT, along with her global work in Haiti and beyond, was inspiring as always. It was also great to see her on the D-tech and research discussion, with a fellow Type 1 PWD Pat Fueger here in Indy who's a diabetes research at Indiana University. Pat's a great guy and we're on the Diabetes Youth Foundation of Indiana (DYFI) board together, but this was the first time I had a chance to hear him present on the interesting world of D-research he's involved with.

What stood out to me the most, as always, was having the chance to meet other people in the D-Community who live here in Indiana and surrounding areas. There was a handful of Adult Type 1 D-peeps there, including a firefighter who has type 1 and another who works in nursing. It was great to connect with a few new friends that I hadn't met or connected with in person before! And one aspect of the conference that I really enjoyed was an ending panel, where a trio of local Adult Type 1s shared their stories and talked about life with diabetes. Leading that panel was also a veteran PWD Dan Pollom, who's been living with type 1 for 50+ years and was a practicing endo here in the Indy area until he left for the corporate side last year at Lilly Diabetes.

I was also very pleased to see JDRF Indiana include a session on D-Burnout, where depression and the whole psychosocial aspect of diabetes was discussed. The session was pretty basic, but it was great to see the awesome Dr. Bill Polonsky mentioned along with some encouragement for people to reach out to the Diabetes Online Community. Although, on that point, the speaker -- Dr. Mary DeGroot here in Indy -- did urge us to connect with only those DOC resources that are "affiliated with a professional" to some extent; I kind of cringed at that point. I hope Dr. DeGroot knows that we're not turning to the DOC for medical advice or specific answers to treatment issues; many of us turn to the online world to find our peers, those people who "get it" and can help on the emotional aspects and help us not feel so alone in living with diabetes. That's an important distinction, one that the medical community's getting better at recognizing but is still not fully equipped to understand. Still, despite that, I was glad to hear her mention the DOC and recognize the importance of turning to those peer support places online to the extent she did.

Reflecting on the daylong conference, the personal connections were really the best part for me --meeting for the first time in person the great Rick Phillips who lives here in Indiana and is one the welcoming committee for TuDiabetes.

There were a number of other adult PWDs there, as I could tell from some random sightings of insulin pumps and D-device beeps... but there just wasn't enough time to connect with everyone!

Of course, all of that D-Connection brought to mind a side discussion that's been on my mind lately...

How much does diabetes really define me, and is it by my own choosing? 

 

One of the Adult T1 panels was a guy in Central Indiana who was diagnosed as a kid 28 years ago. He was very adamant that diabetes isn't a defining part of his life, and that really it's something you just deal with and move on; not something that needs to be "waved about" if you don't want to. It really made me think of how I was before finding the Diabetes Online Community back in 2005-2006, and especially before I really dived back into this world in later 2009.

Those days were when I wasn't "advocating" or writing about diabetes, and my own diabetes wasn't something I actively wore on my sleeve and shared with the world. Of course, I can't talk highly enough about the great DOC and how much it's been a positive force in my life these past several years. But there is a part of the pre-DOC Days that I do miss....  when it wasn't on my mind all the time, personally and professionally, and it almost seemed to be another aspect of my life like putting contact lenses in my eyes each morning.

This D-peep told me he doesn't see the need to connect with many local PWDs, and as he's happily using injections doesn't see the need to use an insulin pump or have a constant blood sugar number in sight through a CGM. I told him what I shared during the D-Burnout session, about sometimes disconnecting my CGM and even my insulin pump to just go back to the basics and not have to focus so constantly on my D-data. That's almost a "mini vacation" from my ususal routine, and it can be quite freeing.

He nodded, totally understanding and agreeing.

There's a lot to be said about all the great diabetes tools we have access to in this day and age, and especially for the DOC support that is there if and when we need it. But sometimes, it can be too much and make us focus more on this condition than we might actually need to.

As I was finishing up this post, I saw that Kerri had an interesting post over at sixuntilme that really seemed to be on the same point -- Define or Explain?

It's an interesting question, and it's one that I do not think has a clear answer all the time. Like everything else in diabetes, it varies per person and where you are in life.

Sometimes, I decide to let diabetes define me and I choose to wear that hat.

Other times, diabetes is an asshole and interferes with my life and tends to define me in those moments against my own will.

But more often than not, it doesn't define me. And even in those times when diabetes may explain me, it's better left unexplained because diabetes doesn't have to be a part of the conversation or focus. Sometimes, I just don't want to connect with D-peeps. Or attend diabetes conferences. Because in those times, I am struggling just to manage my own personal world of diabetes and all the emotional baggage that comes with it.

That's the balance I find myself trying to strike now, especially as we head into this busy diabetes conference season where D is on the mind.

With the worlds of covering diabetes issues, doing my own D-management and connecting with PWDs, that balance becomes even more critical to avoid burnout and whatever else lies beyond that point.

5 comments:

Scott E said...

Mike, I couldn't agree with you more about the whole choosing-to-define-me thing. I see that start to happen to me sometimes, and when I do, I take a step back. I find that engaging with the D-community often means disengaging with the non-D people in my life, and there are far more of those non-D folks that I see every day. I often have to remind myself of the good things that the DOC has done for me to keep me from stepping back too far and going on with that easier life you spoke of. But I won't wait for burnout to step back either.

You put these thoughts into words really well, and I'm glad you did. (And for what its worth and as far as my reputation and credibility goes... I *am* a professional. Just not in the diabetes field)

StephenS said...

You're right Mike... there isn't a clear answer all the time, and it can vary depending on where you are in life. That's very true in my case. I really enjoy catching up with people, virtually and in person, but attending everything under the sun isn't possible when we've got a non-D life too. On the other hand, I know exactly zero local PWDs, and not much happens for adults locally here. So if I'm going to engage with others, I need to go where the people are. Thanks for sharing this very thoughtful post.

Sara said...

I get the idea of not giving diabetes any more attention than it deserves (not much) but I don't get how choices of d-technology fits in with that. I use a pump and CGM exactly SO I don't have to think about my diabetes all the time. I'm not worried about what my BG is before I want to exercise because I can see an arrow. Same with bedtime. I think there are still a lot of misconceptions out there about the imposition of technology.

Mike Hoskins said...

Thanks for the comment, Sara. Technology is a two-sided coin. On one hand, we're so much better off because of the insight it gives us about what our diabetes is doing and where we're at. But sometimes, it can be an imposition because we're ALWAYS watching it, always looking to the graph or wondering why a pump is beeping or having to change a site. It can overwhelm, at times, and be more of a hassle than it's worth (especially if we're not using it as 100% as we could to ID trends, issues, so on). That's where the balance comes in. I wouldn't sacrifice my D-tech for anything, because it makes my life a lot better. And as to CGM, it's saved me from scary Lows so many times, especially overnight. But yes, there are times when I get burnt out from all the data and tech requirements, and that's when I find disconnecting does me well. Personal choice for everyone, obviously.

Michael Schwab said...

Well said as always Mr Hoskins!
Nice Jersey
Sorry I missed this event :(