Yesterday, I was at the JDRF TypeOneNation event in Dallas (big thank you to Tandem Diabetes for sponsoring my attendance in full – more on that disclosure here), and I did two presentations.
Despite only seeing a circuit of airport/shuttle/hotel/shuttle/airport, Dallas was fun.
During my talk on “Life After Diagnosis,” a family asked about my views on diabetes, citing that I seemed to have a lot of energy. (Little do they know that coffee is to blame. A real one; my first in several months. And it was lovely and made my brain go hey I still work – jump up and doooooown!)
“You seem very bubbly, and very positive about your diabetes. My daughter hears a lot about people who are very positive and upbeat about their diabetes. She is not there yet. How can we help her get there?”
That’s a loaded question, because it runs on the assumption that once you hit a moment of diabetes acceptance, you stay there. This September, I’ll mark the 30 year point with type 1 diabetes, and I’ve had more than a few run-ins with diabetes burnout, episodes of less-than-optimal, and emotional struggles with diabetes. Sometimes that’s not properly conveyed here on my website, and less-so in person, because I don’t like to write about struggling too often. It’s not a matter of being ashamed of the struggle, but more that chronicling emotional stress sometimes adds to emotional stress.
Think about it: if you’re feeling crumbs-ish about diabetes, and you make a list of reasons why you feel crumby about diabetes, now you have this list of crumbs-inducing stuff staring you in the face. A bulleted list of reasons you should feel like garbage. That kind of reinforcement is not my jam.
For me, itemizing my grief doesn’t work. What does, at least for now, is identifying what’s bugging me and then embracing the opposite of that bug. In the past, I’ve actively hated the process of checking my blood sugar. Oddly enough, a new meter case was enough to trick my brain into being less frigging angry about it. When my blood sugars were tanking after exercising and frustrations were mounting, my husband helped me focus on the benefits of the exercise itself, even if I was consuming a juice box (or four) after a specific workout. Focusing on small victories made dealing with some of the bigger bullshit moments easier.
And sometimes I’ve just needed time to fill back up.
Diabetes “acceptance” isn’t a staircase, where you achieve a mental milestone and continue to work from that point. If anything, the emotional aspects of diabetes are more like an escalator that sometimes stalls out and becomes stairs, which then sometimes collapse entirely to become a slide backwards. I’m not sure what’s at the top, what the apex of acceptance might be for other people, but for me, I picture it as feeling comfortable taking a few steps forward at times, knowing full well I might stumble back.
The point is, there’s always something. People aren’t always honest about what they’re struggling with, which can paint a perception of achievable diabetes perfection, which is absolutely not a thing. I’m not sure how to advise someone to “get there,” but instead assure them that “there” looks different for everyone touched by diabetes. Community, and connecting with others who understand on the most nuanced of levels, helps. Diabetes is a journey. It’s a pain in the butt. It’s a constantly needy little thing that shouts often and loudly at times, whispers quietly and pokes me with an unraveled paper clip at others.
But at the end of the day, diabetes is ours to wrangle in, and on our worst days, the diabetes community helps us to hog-tie that shit.
(Also picturing comfortable pillows and one extremely fluffy and endearingly cross-eyed/double-pawed kitten at the top of this staircase, and maybe a giant iced coffee that I can stick my whole face into and then sprout gills to be able to breathe under coffee. To be specific.)
I fully agree with you but sometimes we paint a picture of postive, achievable, doable optimism and what others perceive is that we’ve got it all figured out. A couple of weeks ago I was at a funeral service, and “on the go” I checked my blood sugar, popped in a couple of glucose tabs and kept on walking… A friend said: Oh, you really are on top of everything. I just smiled but…
Nice post, Kerri. I would think most readers know the Energizer Bunny Kerri who has un-bubbly periods chunks of time plaguing your days like everyone else. I think you do a very good job of sharing your truth, depicting the well-rounded-but-fed-up-at-times bubbly gal that you are. Rock on.
Yes, you’re correct, it is a journey and sometimes we stumble. Developing the emotional resolve to ask for support and then pick ourselves up to keep going requires determination. It isn’t easy and the support is essential…but it sure as hell is worth it.
Naw, I am not an itemizer, Heck I am full on wallower. Wallowing is way more fun, ahh not. I do really like listmakers though (my wife) because she gives me the steps to find the end of the hole. Of course wallowing with her is fun as well. 🙂
I referred your blog to the TUDiabetes blog page for the week of May 2, 2016.
What they don’t understand yet is that she may get there for all of 15 minutes. Or a day. Maybe even a year. But things change as well all know. The goal isn’t to tick it off as a task on a list, but to learn to live with the rolling log and know when to jump off to the next one as you go down the river. And avoid alligators. FYI, my personal theory of the meaning of life is that it’s really all just one long game of Frogger 😉
Wish I could have been in Dallas this weekend but the weather and our plans in Houston didn’t jibe with a drive. Hope you had a good time!
Yesterday the receptionist at my dental office needed a new health history.
Of course diabetes type 1 was at the top and f my list.
As we were going over the form, in passing I said ” it will be 46 years since my diagnosis
Her reply was ” yes, but you take good care of yourself”
I get that a lot when I tell people who sometimes are mere acquaintances.
Where do people get such insight ???
Ps I guess I hide the lows, highs, vision complications, compromised kidney function, and neuropathy extremely well
It always bothers me when people say “you take good care of yourself.” How do they know? Because I’m alive? I could be hanging on by a thread for all they know and it also just feels so glib, like they’re minimizing what living with T1D is like.
Agree
I was there for this conversation at the Type 1 Summit, I loved your answer! My son is Type 1 and only 10 years old, he embraces it and loves to tell people about his diabetes. It was good for me, as an adult, to hear your adult perspective and to know that it does not always have to be unicorns and rainbows.
“…because it runs on the assumption that once you hit a moment of diabetes acceptance, you stay there.” — GREAT POINT! I wish every parent could know that just because their kiddo hates diabetes right now or is doing great with their diabetes right now doesn’t mean that won’t ebb and flow. I think the most any parent can do to help their child see their diabetes in a more positive light is to act more positive about it themselves.
Great post, K.