Tag Archives: communication

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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Knowledge, respect, empathy.

I received a wonderful bit of feedback from a colleague at work this week:

”Steve, you did an incredible job facilitating the Millennial panel. You have a knack for being able to ask difficult questions and getting people to open up. Your presence had a calming effect on the group and you exemplified active listening when you rephrased our responses to gain clarification. I hope you take the opportunity to do more facilitation because you’re great at it.”

Little did this person know…

Since I don’t share much of my work in the diabetes community with the people I work with, there’s no way for this person to know that I actually have recent experience facilitating. But this feedback helped underscore the importance of conversation, and the equal, if not exceeding, importance of listening.

A lot has been written about the importance of communicating with your medical team, how to share goals and concerns with them, and conversely, how we would like to be talked to by our medical team. In fact, we talked about this a lot last Thursday during the DSMA Live event in San Diego, which was live via Periscope with the #DSMA Twitter chat going on simultaneously during the American Association of Diabetes Educators conference. This was the first time so many CDEs were involved in conversation with People With Diabetes at the same time, in the same space. We talked about a lot, and I think we all learned a lot too.

I think there are specific themes that translate to our communications with doctors, Certified Diabetes Educators, and other healthcare professionals we see on a constant basis. It’s important to get our points across, and it’s important to listen to and lean on the knowledge and support of caring, dynamic healthcare professionals.

Patients, let’s not forget– the conversation works both ways: just because I live with diabetes doesn’t mean I have the market cornered on sorrow. Maybe my endo has a family member that’s causing a great deal of stress in their lives. Maybe a CDE just got yelled at by another patient. Maybe an ophthalmologist is dealing with the chronic pain that afflicts people living with arthritis. As much as we try to shake things off (being human and all), all of these and more can affect conversations.

And in some cases, our HCPs need to up their game when it comes to reacting to patients. Sometimes we need advice. Sometimes we need changes to our therapies that we’ve been unable to figure out because we’re so close to our diabetes management. Sometimes we need to convey our fears without being judged that we’re not “in control” of our diabetes. Whatever the case is, the fact is, we need something or we wouldn’t be there.

So what can we do? How do we make the conversations between healthcare professionals and patients better, more meaningful, more impactful? Much of it comes down to knowledge, respect, and empathy. And remember, these ideas go both ways.

We need to bring our knowledge to the table, not be afraid to display it when necessary, and not be afraid to admit when we don’t know something. I mention that last part because in the past, I have been more likely than others to gloss over something I don’t know. Admitting that you don’t know something can be difficult because it can make you feel vulnerable. Getting over the feeling of vulnerability can actually be quite freeing. One less thing to worry about. Getting over it can be helped along through respect from the other side of the conversation.

Respect is one of the things that is hardest to get right. On the surface, you wouldn’t think this is true, but respect can often be something we can easily hold back on (for “evidence of worthiness”, for example), and it’s something that we can lose and lose track of quickly without really recognizing that we’ve done so.

But respect for the other person in your conversation really allows for someone to be vulnerable. It allows some space, some comfortable air, for a patient to state that they don’t know what a dual wave bolus is, or that their diabetes burnout is really scaring them. It gives a doctor the room to say that they don’t know anything about inhalable insulin, but they will check it out to see how you can safely fit it into your diabetes management.

Empathy is something that, as I’ve stated before, People With Diabetes possess in abundance. But, and I hate to say this, but sometimes it seems like our empathy only extends to the others in our community. We have empathy in abundance. I think we have enough to spread around to our HCPs too, if we’re not doing so already.

Healthcare professionals can show empathy simply by considering us as human beings first, and as patients second. Though it’s a huge part of our lives, we are more than our diabetes. Those aren’t words that haven’t been written before. But maybe someone hasn’t read them before? Maybe there’s someone who has forgotten them? I don’t know. I do know that becoming empathetically invested in someone else’s life and goals and hopes and aspirations does not cost one single dime. And usually, the rewards are more than worth the effort.

I guess what I’m saying is, you can be a great facilitator too. When you apply the principles of knowledge, respect, and empathy to your online and offline conversations with others, whoever those others are, your conversations mean so much more, allowing room for honesty and growth for the people affected by those conversations. And doing so leaves little room left for judgement. Remember:

I support you… no conditions.

How to react? How not to react?

For the benefit of anyone reading this months down the road:

CrossFit, the fitness company, posted a tweet that was particularly offensive to People With Diabetes. It was wrong, both in its tone and its wording, and because its statement had absolutely nothing to do with actual, you know, facts.

After this tweet went out, members of the diabetes community did their best to show their outrage at such a gutless attempt to guilt people into working out using their program, and shame People With Diabetes. Which brought out more ridiculous responses from the CrossFit CEO. Stupid is as stupid does, I guess.

The biggest diabetes organizations in this country got involved too, posting their own social media messages in response. For the most part, I was happy to see this. It’s good to know that when someone tries to hurt you via social media, JDRF, ADA, and others have your back.

But… and you knew there would be a but… some of the reactions were less than stellar from an inclusiveness point of view.

Is that too vague? I’m not sure I know how to put it into words. I think what I’m saying is, when I see a popular singing star, who lives with diabetes, tweet “Know the difference between types of diabetes”, I wonder what in the hell the different types of diabetes have to do with this issue in the first place. I’ve gotta admit… when I saw that one, I cringed a little bit. Why?

Because when we point out that my type of diabetes isn’t to blame for [fill in the blank], or we say this type of diabetes isn’t caused by [fill in the blank], we’re also implying that some other type of diabetes is to blame, or some other type of diabetes is caused by something that our type isn’t. Don’t believe me? Ask a Type 2 how they felt about some of the most vocal responses to the CrossFit issue.

And if you say, “Hey, well, that’s not what I meant”, I will tell you that it is not what you say, but rather how what you say is perceived that is important. Just ask my wife. And, Type 1s, when we make Type 2s feel this way, we are alienating 25 million People With Diabetes just in this country. 25 Million potential allies in the fight for better care, better access to medication, better acceptance by society. And, Type 2s, if you ever alienate Type 1s, you are alienating one of the most resourceful and vocal groups of diabetes advocates on the planet.

To varying degrees, we are all getting screwed in the media. To varying degrees, we are all getting more attention in the media. I don’t have the exact textbook way to respond to situations like these.

I just know that, like I’ve said before, it’s not always important to get there first with the most anger. It is extremely important that we respond to shaming and stigma-inducing ridiculousness by starting with what is in our heart… considering everyone affected by (and potentially viewing) the initial issue, and potential responses… and holding up a light to our shared humanity, and giving a voice to that shared humanity, in a way that protects us all, lifts our common cause to the highest plain, and encourages thoughtful discussion and meaningful change for the better.

I think that’s the longest sentence I’ve ever written.

There will be more discussion on this topic, coming on the next episode of Diabetes By The Numbers, here in a few days. As always, your opinion matters here too.
 
 
 

Let’s talk.

I feel like this must be Hypoglycemia Week or something. I’ve already read two excellent posts on the subject this week, which I’ll link to during my post today. First, let me share a few photos with you:

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I received these scrapes and bruises (plus a couple of bruises on my head) thanks to a Sunday night low that happened around midnight. I was alone in the house, and I fell down once getting to the kitchen, and once in the kitchen. I never lost consciousness, and everything turned out okay in the end. But I had a serious fog that lasted for a while. I also spent some time after cleaning up spilled juice and a broken candy dish, so I wound up getting about 4 ½ hours sleep before heading to work on Monday.

I should mention that I believe this low was a mistake on my part, borne out of frustration for a remarkably stubborn high the previous Sunday. I didn’t want to face that again, so I over bloused. When Allison Nimlos wrote of her Sunday low, she did a great job of describing, clinically, what I think happened to me on Sunday night too.

For me, writing about this now is more of a thought process, stream of consciousness thing rather than a “Look at my bumps and bruises, feel sorry for me” thing. Scraped knees, bruised elbows, and a bruised head just serve as outward reminders of what happened. But how do I talk about it?

When I put on a pair of shorts and go outside, what do I say to my neighbors when they ask what happened to my knees? Do I come right out and say what happened? If I do, I don’t want to invoke pity. I don’t handle pity well. I don’t want to draw attention to myself that way. But I also don’t want to admit to a mistake in front of someone who doesn’t know me well and doesn’t live with diabetes day after day. Because the truth is, I can have 364 great days of diabetes management in a row, and one bad night can happen anyway. Every day is different. I don’t want someone thinking that the bad night is the norm, or something they have to worry about.

It’s weird because I want to look like I’m handling my diabetes well, but I need to be realistic and recognize that I’m not perfect. I think this is the kind of thing that people mention when they talk about wanting to be “normal”. We just want to live our lives, and not do or show anything that makes us stand out. We just want to be seen as “normal”, when really, our life is already normal. For someone living with diabetes.

So we keep it all inside, which leads to frustration and feeds the feeling of guilt over what happened. And the feeling of being alone, because we’re keeping it all to ourselves. Let’s face it: I made a mistake. I can’t make that mistake again! If I do, I’m less than perfect! No one will appreciate me or love me if I’m not perfect! If anyone knows about it, they’ll know I’m not perfect!

Then we complicate things by thinking: What does it hurt if no one really knows? If I don’t talk about it, no one will know that even though I’m doing better than ever in my constant battle with this condition, I still screw up one percent of the time (or maybe two percent). Or maybe I do everything right and my endocrine system doesn’t cooperate anyway. But as long as I don’t say anything about it, they’ll think I’m sitting at 100 mg/dL all the time. Problem solved, right?

The hard reality is that if I’m going to own my diabetes, I need to own 100 percent of it. One hundred percent of the time. That’s really difficult to admit, and even more difficult to put into action.

But if I don’t, I’m being less than honest with myself. It’s hard to keep that up for very long without imploding. And if I’m less than honest, less than forthright with my story, I miss the opportunity to share how incredibly dangerous living with diabetes every day can be. I miss the opportunity to explain why new technology, new drugs, and new therapies are crucial to saving lives, and in our country, saving money.

Understand me: It is really difficult for me to share a story like Sunday night’s outside of a forum like this one. But… It is very, very important for me to do so. People need to know how serious diabetes is on an everyday basis, and the damage that it does. I think many don’t know, or they forget. Not everyone is going to give us a pass for one slip-up. But if we’re honest with ourselves and others around us, the truth is that some people will. I also know this: Every generation that doesn’t bring their diabetes out in the open means another generation goes by thinking everything is just fine with us. And not understanding when it isn’t.

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I’m doing the best I can. But every day is different with diabetes, and so every day the potential exists for me to kill myself with too much or too little insulin. Sometimes that happens because we can’t get the supplies we need to test our blood sugar as often as needed. Sometimes that happens because people are over 65 and Medicare won’t approve a CGM. Sometimes that happens because my body used insulin a lot better today than it did yesterday, and different from the way it will use it tomorrow.

And sometimes, it’s because I made a once in a year (or five years, or ten years) mistake.

I’m not perfect. Diabetes is unpredictable.

Smarter, more accurate technology will help minimize those errors and keep me out of the emergency room. Better coverage for CGMs will help seniors live longer, more meaningful lives. Better drugs and delivery systems will help me live a more normal life. More diabetes research will help today’s children achieve more than anyone can imagine. And why not? Why shouldn’t they?

I know… life is tough, and we all have our problems. Why shouldn’t we all have the same opportunities? My pancreas has failed. I am not a failure.
 
 
 

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