Category Archives: Relationships

Sharing Diabetes in our Everyday Life

So… now that we’ve talked about sharing your diabetes (or not sharing your diabetes) with the people you work with, let’s talk about interacting with others. Non-work others, including people in the diabetes community itself.

Thinking about writing something on this subject was really interesting. So many things we encounter while interacting with others can be charged with emotion. There are some potential land mines here, so let’s tread lightly.

It seems to me that a good place to start on this subject is right where we started on my previous post. You have to decide whether sharing your diabetes, and your diabetes details, and giving up any medical data privacy protections you might enjoy, are worth it. To you.

That said, should you decide to share, there are plusses and minuses you will undoubtedly experience.

Everyone has encountered the “you mean it won’t go away If you eat yogurt?” person. Also, the person who wants to shoo you away from anything that has sugar in it. These situations are relatively easy to deal with, simply by knowing what you’ll take and what you won’t take from someone.

That can change from situation to situation, but can also change based on how we’re feeling that day. It feels really great to set the record straight and debunk myths. But if you feel like you just don’t have enough energy to school another person today? That’s fine too. Their ignorance isn’t your fault.

Most of the time, I do my best to set the record straight when someone spouts off incorrect diabetes information. But there are nuances too. Sometimes, we give what we think is a super explanation of why we need to do a glucose check even though we’re wearing an insulin pump or a CGM (“wait… you’re not cured?”), and the person receiving the information cannot grasp it anyway. Again, not my problem. I tried.

But what I can do in those situations is be grateful they listened at all. I can be patient. I’m not responsible for someone’s ignorance, but they’re not responsible for my diabetes either.

In some situations, maybe all I really can accomplish is to plant a seed in their mind to remember me whenever diabetes crosses their lives again. And that has come in handy, when someone they know has faced a new diagnosis, or a family member wanted to know more about introducing insulin to their Type 2 management. So not everything that seems like a failure really is.

Diabetes or not… kindness, being a good listener, asking respectful questions, and a smile still go a long way with people.

When I worked as a retail manager, I would often hear the phrase “the customer is always right”. I would tell the people working for me that the customer wasn’t always right, but they should never be made to feel as if it’s their fault they’re wrong. That’s sort of what I’m talking about here. Make sense?

We’re so hard wired sometimes to perfectly explain what we know to be the diabetes truths. We have to be, in order to dispel misinformation and advocate for those who cannot advocate for themselves. The more we can do that with a smile, a joke, or a kind word, the happier both I and my family and friends will be.

After all, as much as it’s about being right, it’s also about building relationships, friends, and allies. No matter what, whether you share a lot or a little, remember:
I support you… no conditions.

Diversity of thought.

As I was growing up, I imagined that at some point, I would be part of a group of friends and colleagues who retained the things that made them unique, while embracing solidarity in the things that made them alike.

Let me tell you, that did not seem possible for a long, long time. In my twenties, a lot of it was my fault. I had exactly zero social skills in those days. It seems like for longer than I care to remember, I had the market cornered on saying the worst possible thing at the worst possible time. Possibly.

Toward the end of my twenties, I met two people who really taught me a lot about communicating with others, and a lot of what it means to show empathy for another human being. And they taught me the importance of listening. Not just listening because every article and blog post on connecting with others says that listening is important. But because others connect with you when you listen. I have learned so much from these people.
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In addition, I began to read a lot more than before, and my interest in history and challenges that people have overcome has helped me see that successful people are not successful 100 percent of the time. Once I realized this, I could begin to make sure that, as the song says “temporary setbacks / are part of what I’d planned”. I could be nicer to people because I wasn’t as worried about appearing to be the most successful person in the room every second of every day.

It’s not like I was a jerk or anything; at least not intentionally. It’s just that I started to be more open to considering other viewpoints, listening to what others had to say. Then one more important development happened:

The internet blew up.

Now I had access to viewpoints from around the globe, something I had been seeking for a long time. Granted, a lot of the viewpoints you read on the internet are completely whacked out, even in the diabetes community.
but many are not. In fact, some of the most insightful, most poignant nuggets I’ve found have been from quiet little corners of the web where, statistically, few ever go.

Has it helped my diabetes? Sure it has. I’ve certainly learned a lot. I’ve been saved from mistakes thanks to a couple of things I’ve read over the years. And I hope I’ve been able to help people learn, and find help, and find support, shouting through my own window onto the information superhighway.

I’ve also been lucky enough to connect in person with many I’ve encountered first via the web. I’ve been able to prove something that was told to me by someone long ago: that privately, most people are pretty much the same as they seem in public. Through this DOC, that means I’ve been able to meet many wonderful souls who continually teach me a lot about being a person who practices both perseverance and empathy in equal measures.

In the end, I’ve been lucky enough to find those special, unique people who share a lot of my goals and hopes for the future. Whether I’ve met them in person or not, I am invested in the things that are important to them. I am hopeful for their futures too, because what’s good for them, and good about them, is good for me too.

So remember to listen. Let your empathetic side show. Invest yourself in the success of others. You’ll find that you’ll learn a lot, care a lot more about people, and find more friends than you could ever imagine.

Close encounters of the online kind.

Okay, so my offline life with diabetes doesn’t offer much interaction right now.

On the other hand, my online diabetes life is chock full of interaction.

In fact, it keeps me on my toes all the time.

I never connected with the Diabetes Community at all before finding the DOC back in 2011. Never even heard of such a thing. Now, there are many people who sort of live inside of my computer or mobile device, whom I read and trust and admire. And yes, interact with.

I write this blog for a variety of reasons. I write to add my voice to the conversation. I write to advocate so others can add their voices to the conversation. I write to inform, when I can. And often, I write just for me. Because I like to write. Because, when I’m gone, I hope to have left a sliver of what my life was like here in the 2000-teens, with Type 1 Diabetes as a constant companion.

So sometimes, I’ll write something just for my own sake, recounting things that make me happy, even if it doesn’t necessarily move the diabetes needle further toward a cure. Occasionally, in those moments when I worry that my mind will go at some point (Mr. Glass Half Empty), I take comfort in the knowledge that at least I’ll be able to go back and see who my friends were, even if I can’t remember all their names by then. I’ll just have to remember the web address. That’s what Favorites are for, I guess.

I can’t tell you how much fun I have moderating the DSMA Twitter chats every so often. Even when my brain is fried from a long, hard day at my job, in the middle of a cold, dark winter, when my day starts at 4:30 a.m. and DSMA finishes late on the east coast and I’m having trouble keeping my eyes open, I get such a kick from the thrill of a newbie’s reaction to being part of the conversation, or a timely wisecrack from a DSMA veteran (who’s also a part-time DSMA moderator).

It’s weird though. I consider most of the people I interact with online as my friends, even though I don’t know many of them all that much. When they are wronged, when people call them out online, when people try to shame or stigmatize their disease, what they’ve done or how they live their lives, I’m ready to defend them right away. Why? Because someone is trying to hurt my friends. You don’t mess with my friends.

Also, because they’ve been there for me more times than I can count.

We all engage in the ways that work best for us… or are most convenient for us. But together, all of us are part of a greater community (see what I did there?). Being part of a greater community carries with it a certain amount of responsibility. Not all of us have an equal amount of responsibility at the same time, all the time. It comes and goes, depending on a number of factors.

We also have varying amounts of opportunity, depending on a number of factors. I think of opportunity differently. When I have an opportunity to do something, I feel almost compelled to seize on it. Of course, not all opportunities are the same either. What I’m saying is, we’re faced with questions of whether to engage or not engage all the time.

It’s not about repaying a debt to the ether that I’ve somehow concocted in my mind. Again, it’s about being part of a community, being a building block of a group that makes greater things happen, not just by myself, but by holding up my part of the foundation of The House That Makes Life Better for everyone living with and affected by diabetes.

I may have more of an impact online than offline most times. That may have a lot, or very little, to do with me. But I’m happy to engage in any way I can, so all my friends living with and affected by diabetes can walk an easier path toward the future.

How is your online life different from your offline life with diabetes? Do you engage more either way? Do you like engaging more online or offline? Do you seize opportunities, online or offline, when they arise? What makes you say yes or no to these opportunities?
 
 
 

Offline encounters…

I’ve gotta be honest… I almost never come across someone living with diabetes in my daily life. Well, maybe I should quantify that: There are 30 million people in the USA living with diabetes, so there’s a pretty good chance I cross paths with one or more of those people every day.

But I don’t see the outward signs of diabetes, like someone testing in public. I never encounter anyone with an insulin pump unless it’s at a diabetes conference or get-together. Not even at my endocrinologist’s office.

That’s why I feel weird when I read about someone’s talk with another pump user, or hear about someone’s impromptu experience helping someone they don’t know through a low. That kind of thing just simply does not happen in my life.

I used to think I wasn’t looking hard enough. That these moments, these people, were out there waiting to be discovered, and I was somehow missing them in my singular focus to go from point A to point B.

But… no. That’s not the case. Even when I thought I found someone using a pump, it turned out to be an iPod or something similar. From time to time, I’ve come across used lancets or test strips that someone’s discarded, but it’s been a couple of years since I can even remember seeing something like that.

Of course, there could be any number of reasons for this. I’m not even going to go into them here. It just seems like a waste of space.

Thinking about this makes me remember that I’ve wanted to start a local in-person meetup for some time. No, it hasn’t happened. I don’t know if it will happen this year even, but I’m thinking I really need something. Because my sense of connection to my fellow People With Diabetes seems to feel less connected at times, then punctuated with high notes when conferences or other in-person opportunities present themselves. That’s enough to keep me going, but I feel as though I’m missing out on the obvious benefits that result when pancreatically-challenged people meet and share one-on-one. How do I get more of this in my life? Or, flip side… would more of this make it feel less special?

I don’t know, and I don’t have any answers right now. Also, my life is far from empty. I am meeting new people, working on new things, engaging with PWDs in ways that do not involve speaking face to face. That’s not all bad. In fact, it’s been great.

I just don’t think I have a balance yet. Yeah, maybe balance is what I need to seek. Anyway, that’s how I’m feeling about my offline diabetes life right now. Next post: I’ll talk a little about my online life.

Do you seek out real life opportunities to share with People With Diabetes? Do they just happen? What has been a common thread in how you feel about these encounters?
 
 
 

Trust but verify.

There is a dance that we do.

The dance begins when I start packing. We’re not exactly walking on eggshells; we’ve been together too long for that. It’s more that kind of thing where one person doesn’t want to think about the fact that we’ll be apart, and the other doesn’t want to admit it.

The dance continues, almost uninterrupted, until I’m safely at my destination. Then the music almost stops for a while. As long as I’m in constant communication. As plans are made for my return, the dance turns into an almost giddy jitterbug that crescendos upon my arrival at home.

Then, as the dance begins to wane, there is a little more uneasiness. An almost tacit understanding that the descriptions of my experiences are expected and welcomed, as long as it doesn’t include certain subjects.

This is how it works with us after 21 years of marriage and 24 years of living with my diabetes. Worry that something will go wrong while I’m gone, and she won’t be there to help me. Concern that I’m enjoying myself, and also taking care of myself at the same time. Crazy as it seems, sometimes I need to be reminded that my health comes first. And her knowledge that I’ve made my health a priority is a very, very close second. In that regard, the term “détente” comes to mind:

Trust but verify.

This is a dance that goes on whenever I leave, for however long I’m gone, and a little after I’m back, whether I’m just going to the office for the day or going to another continent. The dance takes several forms, and often ends in frank discussions about how both of us feel about my diabetes and how it affects our relationship and our daily lives.

Trust but verify.

The dance changes, but the dance continues. I suspect it will continue for a long time. Because as the dance continues, our lives change. Our relationship changes. My hope is that it will grow stronger, but that I will also learn more about the concerns that are part of her world and make her the partner, the cheerleader, she is.

After all, who doesn’t want to be a better dancer?
 
 
 

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