Category Archives: Relationships

Reconciling Superlatives

October 25, 2018 – 2:30 pm

You know, I kinda hate the idea of writing about what someone else wrote. The idea is theirs originally, and if I write about it too, then I feel like I stole their idea.

That said, I hope you will permit me this one deviation from that notion. Because I read a blog post at Diabetogenic this week titled The Weight, and I’m having a tough time reconciling what I think was a well thought out statement, with my own feelings on the subject. If you haven’t, you should probably read that first before continuing here.
 
 
I’ve never met a single diabetes advocate who considered themselves a good advocate. Some won’t consider themselves advocates at all. I’ve never met a good diabetes writer who considered themselves a good writer either. Yet… I consider those people good advocates. I consider some people good, or even great writers.

When I notice that someone hit a milestone in their life with diabetes, I want to congratulate them. I want them to know that someone recognizes how hard it is to live day after day with this condition. I recognize that sometimes staying alive requires at least occasional moments of extreme bravery and conviction.

I’ve referred to PWDs as brave souls. I’ve referred to PWDs as incredible and amazing. Heck, I hand out medals that say “Champion Athlete With Diabetes” on them.

I like making people feel better by extoling their accomplishments in “syrupy superlatives“, to borrow Renza’s expression.

Still, she has a very valid point. We are just doing what we need to do to make it another day, hopefully giving ourselves a better chance at a long-lasting (and long-living) legacy.

I can understand why someone would want to be complimented for something other than their diabetes. Why wouldn’t someone want to hear their friend tell them their t-shirt is cool, or they’re a great parent?

So I’m in a bit of a conundrum. How do I reconcile my strong desire to make people feel good about their life with diabetes, while not making it about the diabetes?

Like a lot of other things, this will require some thought, and perhaps a shift in how I interact with other People With Diabetes. That’s not a bad thing.

I’m not afraid to take a look at myself, and whether I’m doing someone a service by complimenting them about their diabetes, or just making them uncomfortable.

For the record, I’m grateful for diabetes bloggers who give me something meaningful to think about now and then. I’m okay with being challenged about how I communicate with others.

I just want to be worthy of the challenge.

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One at a time.

June 4, 2018 – 10:11 am

How do we build community?

Many people have asked me this in the past couple of years. Like many other questions, there is no simple answer.

Actually, let me retract that. The way to build community is one person at a time. I think the “how” in How Do We Build Community comes from that.

It’s hard to imagine building a wide, resourceful, vibrant community one voice at a time. Maybe you live in a rural area, and you only come into contact with so many people every day. In your case, or even in more populous places with greater resources, let’s face it, one by one sounds like it would take a very long time.

Yet, somehow, we’ve managed to do it. We have huge organizations that provide education, funds for research, publishes the latest findings, and advocates for us before elected officials. There are also organizations that work on one or two specific aspects of living with diabetes, and they help all of us in concentrating on just those things they know well.

In addition, there are groups that work with People With Diabetes on issues that they might be experiencing all on their own. Someone who seeks help with things that are bigger than they are, but sensitive enough that they require a specialized approach. Where would we be without that one on one interaction in those cases?

How about the doctors, nurses, Certified Diabetes Educators, and other healthcare professionals who help us live the healthiest form of diabetes possible? There’s a chance to add a few more people to your community.

Let’s not forget the device makers who make CGMs and insulin pumps, and the drug makers who are finally getting around to faster acting insulins and biosimilars, and are developing even more effective Type 2 medications. They charge us an arm and a leg to stay alive, but they are undoubtedly an important part of our existence.

And I can’t forget the bloggers, podcasters, and Twitter and Instagram and Snapchat devotees who share their stories for the masses, emphatically putting the Online in Diabetes Online Community.

When I really think about it, I can see that my own diabetes community began with one person: Me, at the time of my diagnosis. From there, it has grown one, or sometimes two or three people at a time, until after 27 years, I feel like I have an army of people all pulling for me to succeed.

That’s pretty powerful. And it leaves me with kind of a dual responsibility: keep the community growing by welcoming others. And use my place in this powerful community for good. My success exists thanks in part to countless individuals associated with the groups I’ve noted above. Now it’s my turn to give, and help others. So, let me ask you:

How do you build community?

By StephenS | Comments (2)

Conversations.

August 24, 2017 – 12:30 pm

“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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Now, more than ever.

June 30, 2017 – 9:18 am

I wonder sometimes if I haven’t changed over the last several months.

These are tough times here where I live, and it seems like many of the things I believe in, the things I was taught in school, don’t really apply to today’s America. Or maybe this is the America that was here all along, but it’s just showing itself in a more public way. I realize just reading that can inspire different interpretations based on your political leanings, but this is not about that.

Regardless of how you look at things, there seems to be a lot to worry about.

I’m getting older… there’s that. And, of course, health care is multi-faceted and multi-argued, and it probably will be for the foreseeable future. Where I can, I’m trying to be a better friend, a better colleague, a better person overall. However, in some ways, I fear I’ve become a less happy person at times.

Let’s face it… I think we’re all feeling a little more stressed out these days.

That’s why this community, this diabetes community, is so important.

Photo courtesy of The Diabetes Collective, Inc.


That photo is from the second Diabetes UnConference. There are a number of friendships that begin on UnConference weekend that continue far beyond the event itself. Friendships that stick to you. Friendships that restore your faith in people. Friendships that make the time apart from each other seem interminable, and the time spent with each other flash by in a nanosecond.

Whether it’s virtually, or over brunch like it was this past weekend, being able to communicate with others who walk the same stretch of road you walk can have a huge, positive impact. There’s something about the feeling you get knowing that you belong, not because you’re famous or independently wealthy or part of another special group… but because you’re stuck with a condition that no one wants. And someone else is too.

It’s the feeling that amazingly, something about this crappy disease is worth celebrating.

Photo courtesy of Rhonda B.


Does this mean we’re not going to experience problems? Of course we are. Life doesn’t go away just because we get to spend a couple hours in the presence of friends.

But those two hours certainly make those problems a little more bearable.

I think that’s the point. Even when we’re up against deadlines and doctor appointments; projects and finger pricks; goals and glucose issues, we have our friends to lean on, who understand, and just help us forget about the drag of diabetes for a while.

Now, more than ever, we all need friends who remind us that there’s more to life than the next big thing to complain about. If you don’t have one, I encourage you to find one or more friends, virtually or in person, who will accept you for the contribution to community that you truly are or wish to be.

Looking to make new friends? Want to talk about diabetes in a safe, supportive atmosphere? The Diabetes UnConference is coming to Northern Virginia October 13 – 15, 2017. This fall, the UnConference is being co-hosted along with the Diabetes Sisters Weekend for Women. Two chances to make new friends! To learn more, and to start the process of making new friends in the diabetes community, CLICK HERE.

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Sharing Diabetes in our Everyday Life

April 27, 2017 – 9:22 am

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.

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