Tag Archives: relationships

Conversations.

“Are you a brittle diabetic?”

Wow. Two things I don’t like to hear in one sentence. But… if you live with diabetes long enough, you’re going to hear questions like that.

I actually had a great conversation with the person who asked that a couple of weeks ago. Once I explained about how “brittle” is not actually a medical term, we got down to the science of diabetes and what it’s really like to live with this condition every day for the rest of my life.

They shared that their spouse is living with diabetes, and the three of us spoke for a while. We talked about what hypoglycemia feels like, and how our spouses reacted. They were concerned that low blood sugar meant failure. I explained that the better you manage your diabetes, the closer you are to hypoglycemia all the time. I think it was an A-Ha moment.

“Is that a pager?”

“No, it’s my insulin pump. You know, you’re only the second person to ask me that!”

I don’t know why, but whenever I use that second sentence in response to that question, it seems to put people at ease. Once I rolled that out, I was able to downshift into why I wear a pump (it’s my choice for my diabetes), and my CGM (I didn’t like it at first, but I’m getting used to it).

I was able to talk about interacting with others online, and how that eventually led to things like a blog and a podcast, and diabetes conferences and FDA workshops and clinical trials, and the importance of all of those.

“Why did your blood sugar go so low?”

This is a question I get when there’s a low that happens more than once, at the same time of day, in front of the same person. It’s a well-meaning question… someone sees something that concerns them, and they want to help me avoid repeating the scenario.

The problem is, there could be a hundred answers to that question. Either I’ve gone low because diabetes just doesn’t react the same way every day, or because I’m trying something new with diet or exercise and I haven’t figured out the perfect routine yet. Or, this just isn’t my diabetes week… it happens. Or, maybe I just made a mistake and I feel bad enough already and I don’t want to admit it.

There are a number of conversations that happen due to my diabetes. Sometimes short, sometimes detailed, sometimes tinged with self-assurance or regret. I don’t know about you… but what I know about myself is that I need to keep engaging in these conversations. It’s not always about feeling great. It is always about enlightenment and being more comfortable being myself, and being myself with my diabetes.

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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.

Sharing Diabetes in the Workspace

Every so often these days, I see someone post a question, either on Facebook or on Twitter, that goes something like this:

Has anyone had any experience sharing your diabetes with people at work? Do I have an obligation to tell my boss? My co-workers?

That’s a lot to ask all at one time. If you’re asking all of that at one time, you’re probably feeling a little stress over the implications of sharing your personal diabetes information with someone else. And that’s a perfect place to start.

This holds particularly true in the United States, but also in other countries: Before you share anything, know that legally, you are under no obligation whatsoever to share any of your personal medical information. With anyone. So the first question you really need to answer is: Do you feel comfortable giving up your legally protected right to medical privacy?

If the answer to that question is yes, and often it is, remember also that sharing that you’re living with diabetes does not mean you’re suddenly required to share everything about living with diabetes. It’s not all or nothing. You still control the flow of information. You can tell as much or as little as you see fit. Just remember you can’t un-tell it. Like adding spices to a recipe, you can always add more as you go, but you can’t take any away.

Those last two paragraphs are really important in my mind. Most employers aren’t likely to make your work life difficult due to your unfortunate diagnosis. That would be illegal. But there are a lot of gray areas too. Imagine telling your employer about your diabetes one week, and the next week, suffering a difficult episode of hypoglycemia. Now, your boss comes to you and says, “How can we keep this from happening in the future?”.

This has happened to me. And it was uncomfortable. And initially, I handled it poorly. Instead of blaming the diabetes, I blamed myself for the hypo, and that set the idea in my employer’s mind that I alone was responsible for making sure there were no more hypos at work. Ever. That’s about as likely as saying it’s never going to rain again.

It also set the idea in my employer’s mind that they could ask me about my diabetes, my personal issues with diabetes management, and pass judgement on them, whenever they wanted. It took a number of years to break them of this habit. If I had been open about the diabetes, and not so open about my management of my diabetes or how I felt about it, we both could have avoided some uncomfortable conversations.

Now, co-workers… Co-workers are a different thing. Co-workers can run the gamut from being incredibly kind, to feeling jealousy over something they don’t understand that they might view as “special treatment”, to giving unconditional support, to viewing your diabetes as a weakness.

I can’t pick your co-workers for you. I wish I could. I’ve been working since I was 14 years old (lived with diabetes since I was 28), so I’ve probably experienced all of these people, often without even realizing how they felt. I can’t change how people will react to my diabetes.

What I suggest to people, which I’ve mentioned at times, is to find someone at work who will understand. One of those supportive people. Find that one person you can count on. That’s who will be able to help get you juice when you need it, or will carry a meeting or a conference call for a few minutes while your glucose and your brain function returns to a reasonable level.

Then, be sure to thank them. Leave a thank you card on their desk. Take them out to lunch. Let them know how much you appreciate what they’ve done for you, and make sure they know they can count on you when they need you too.

In the final analysis, there isn’t one simple answer on whether you share, or how much you share, about your diabetes at work.

I will tell you this, however: If you do share, remember that it’s a relationship. Treat it like a relationship. Everything won’t be perfect at first. That doesn’t mean the efforts to nurture and improve the relationship between you, your diabetes, and your job aren’t worth it.

Sharing your diabetes is not likely to be an overnight success. If you do decide to share, expect that making it a success will require patience. Whether you share or not, the decision is up to you. And whatever you decide, and whenever you decide it, is okay.

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?
 
 
 

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