Tag Archives: Diabetes Community

Uncertain, but Hopeful. Vulnerable, but Resilient.

Make no mistake… there are reasons to be frightful as we near the end of the year. When it comes to diabetes, there is more than one reason to be mad, outraged.

I saw some of that in our #DSMA chat last night.

We talked about what 2018 has been like, what headlines grabbed our attention, and we made some predictions for 2019. Not everyone’s answers reflected hope and inspiration. In fact, nearly everyone, at one time or another, expressed disappointment, anger, or sadness.

But there was a lot of inspiration too. New jobs, excitement over meeting new diabetes friends at conferences, school successes, and a lot more. Seeing this helped reinforce something I’ve known, but have forgotten at times this year.

People With Diabetes are strong. We have more fortitude than even we ourselves could have imagined at diagnosis. We’ve overcome diagnosis, DKA, insurance denials, co-pays, hypoglycemia, stigma, discrimination, and a hundred other things that would try the soul of most healthy individuals.

We continue to pursue our goals, undaunted by doubters and uncooperative pancreases. We give our time and our money as if we had extra to give (truth: we don’t). We champion the causes we’re most connected to, and we champion the individuals that truly don’t have any extra time or money to give right now.

We educate, on a formal and informal basis. We learn constantly, formally and informally, because the nature of our condition and its care is constantly changing. We’re resilient, because what other choice do we have?

I might have forgotten some or all of that amidst all the craziness that 2018 has dished out. But Wednesday night reminded me that even though we’re vulnerable because of a failed organ, we’re certainly not finished yet. We’re still capable of great things.

And 2019 promises even more. Many of our participants in the chat talked about going beyond talk and plans, and moving toward real, concrete action on things like increased access to affordable insulin here in the USA. And more developments in closed loop technology. And more availability of real, meaningful support of those newly diagnosed.

I was also encouraged by how much everyone in our diabetes community is encouraged by others in our diabetes community. How much those human interactions, either online or in person, mean for our health and well-being. That benefit cannot be overstated.

Personally, I plan to continue some of the crusades started in this year and previous years. But I also plan to change a few things, just because I don’t want everything to be the same all the time. And I want to find more time to help and laugh with those in this community who mean the most to me.

Sure, we still have challenges. Diabetes itself challenges us every day. But we have hope. And a brain. And a heart. And courage. And empathy, which is what the last member of the group in The Wizard of Oz received before their part was edited out of the movie.

Okay, I was kidding about that last part, except the empathy. Empathy is important. And so are you. There is a lot for us to still worry about… we all know that. But we have each other. Let’s use our amplified voices for all the good we can, for us and for the ones who need us the most.

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Community.

I speak to you today in praise of the Diabetes Community.

Multi-faceted, multi-talented, multi-country, multi-cultural, it is the living embodiment of selflessness and inspiration. Its accomplishments are many, and its biggest challenges remain to be conquered. For every advancement, every success, failures of our healthcare systems and of our own endocrine systems means our efforts are not complete.

There is much to be excited about. We are connected as never before, through social media and patient-centric organizations. Blogging is still a thing (at least I hope it is), and this community can boast writers that are among the best around at telling their stories of living with a chronic condition. In the past year, podcasting about diabetes has taken off again, and that gives people a chance to hear the latest without actually having to read the latest.

And there are the athletes. Reaching the heights of their chosen sports, amateur or professional, climbing Mount Everest, winning auto races, playing in the National Hockey League. Riding 100 miles on a bicycle, for no other reason than to help raise money for research toward a cure. There are organizations that encourage and help get people moving so they can simply remain as healthy as possible, for as long as possible.

This community is full of passionate advocates, who see a need and try to fill it, or see a wrong and try to right it. Advocates who speak before Congress, who speak before regulatory bodies, who debunk long-established myth and self-serving stigma to anyone who will listen. God bless them. As we break down more barriers going forward, I hope we can find a way to turn our short-term advocacy efforts into sustained, long-term advocacy movements. In the end, a lot of advocacy is simply outlasting those who oppose us.

There are increasing numbers of healthcare professionals living with diabetes, and many who don’t live with diabetes but support us in ways we couldn’t have dreamed of a generation ago. I like how their profession allows them to have both a unique perspective on our disease, and an even bigger motivation to educate all of us about the importance of never giving up on our own self-care.

Yet, there remain difficulties. For every person running a marathon or leading a local support group or participating in a clinical trial, there is someone who lives with depression or burnout that they never counted on when they were diagnosed. There is someone who goes to a doctor once a month to get injections directly into their eyes to help reduce the ravages of diabetic macular edema. There is someone who works hard every single day to even out the roller coaster of glucose readings they see on a continuous glucose monitor. Their issues are not going away, so we should continue to show them the love and support they so richly deserve.

Being part of the Diabetes Community includes things like giving so that children living with diabetes in developing countries don’t also live with a death sentence. For many, it includes occasional happy gatherings full of laughter and hugs and bolus-worthy delights, living life to its fullest. It’s a unique language and an extra set of superpowers that none of us ever thought we would possess, but do anyway because it can literally mean the difference between life and death during tense moments for ourselves or our loved ones.

Diabetes isn’t something that happens to just us; it’s something that happens to all of us. All of us in this community are affected by the successes and frustrations that each of us experience every single day of life with a disease that is with us every single day. It is right that we commiserate in the sadness of a high A1c result or the passing of a close friend. It is equally right that we rejoice together in goals met, children raised, and new technology that makes us safer. Having to live with diabetes is the worst part about my life. Getting to live with diabetes people in my life makes me a better person.

“When I am with a group of human beings committed to hanging in there through both the agony and the joy of community, I have a dim sense that I am participating in a phenomenon for which there is only one word… glory.” – M. Scott Peck

“I have found the paradox that if I love until it hurts, then there is no hurt, but only more love.” – Mother Teresa

Communities are not buildings or monuments or parks. They’re made up of people. Our shared situation and our singular desire to compassionately relieve and delay and eliminate the burden of diabetes unite us as a community in a way few other things can. As each new day dawns, I take solace in the fact that even though my pancreas is faulty, my heart is full.
 

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