Category Archives: Work and Diabetes

What 20 years has taught me.

I’m one of the lucky people in America these days. I’ve been lucky enough to last a couple of decades working for the same company.

Tomorrow will officially mark exactly twenty years since I started working there, and as you might expect, diabetes has intersected a lot of the past two decades. Consider the following:

– I was 35 years old when I started working there

– I had been living with Type 1 Diabetes for 7 years when I started

– I didn’t start wearing an insulin pump until I had been there 12 years

– I didn’t start wearing a CGM full time until I had been there 19 years

Those little nuggets are just for starters. I’m on my fourth insulin product since I began working at my current job. I’ve tried three different CGMs now (four if you count two different versions of Dexcom), and worn at least four insulin pumps, including those worn in clinical trials.

There have been a lot of changes in my diabetes in 20 years, and a lot of change in me. I’ve got less hair, and more weight. I wear more devices, but I haven’t managed my diabetes any better than I’m doing right now.

This milestone is a little different than my 15 year anniversary at work. I’m in a new, much bigger department, so not everyone knows me yet. But in a way, that’s good. I’m beginning to like new challenges, and I’m finding that adapting quickly is one of the surest ways to sticking around after all this time.

We’ve had our ups and downs over the years. Things haven’t always been good, for my job or my diabetes. If you’re lucky, these things usually iron themselves out over time, or you don’t wind up spending a lot of time in your job. Or living well with diabetes.

My job needed to be more empathetic to the minute-by-minute unpredictability of diabetes. I needed to let go of the idea that my job was my identity. I think we both did pretty well.

Where do we go from here? I don’t know yet. I certainly hope I won’t have another 20 years in the workforce. But like I do in this job, I want to keep learning and growing. At work or in real life, my goals aren’t to climb the ladder. Instead, I’d be satisfied if I can just be better.

Same diabetes, new audience.

Many of you know that my job has seen a few changes lately. After over 19 years as part of my company’s Human Resources department, I am now in Technology.

That transition hasn’t been too difficult. I was really doing technology-related work anyway, and my daily duties haven’t changed much, though they’ve changed a little. The team I work with now has been very welcoming. It’s been about as smooth as I could have hoped.

But (and you knew there would be a But)… I’m working with a new group of people, on a new floor. And most of them don’t know that I live with diabetes. It took me years to get my HR colleagues comfortable with my diabetes. How am I going to transition my diabetes to a new environment?

Well, I have a few things going for me. First of all, I am not the same person who walked in the door of my company with barely seven years experience with Type 1 diabetes. Also, I know way, way more about diabetes, how to manage diabetes, and how to advocate for myself than I did back then.

And my company has changed too. We’re not the same white shirt, dark suit wearing uber conservatives that we were in 1998… though no one could ever accuse me of being a white shirt, dark suit wearing uber conservative, then or now. Today, as a whole, we’re much more accepting, much more caring.

It helps too that one of the people on my team, two desks down, wears exactly the same insulin pump that I do. We might be the only two pumpers in the entire building, maybe the entire company. So in the diabetes respect, I am in a much more advantageous position today.

But even if I weren’t… how would I deal with it? How do I express and educate others at work about diabetes? Pretty much the same way I do now.

By being open enough to do BG checks at my desk, and my new desk is in one of the most conspicuous places on our floor.

By checking my CGM in the middle of a meeting.

By sharing things like clinical trial participation and my volunteer work with DPAC and the Diabetes UnConference.

Sometimes, by shocking my co-workers, eating a cookie or two that someone brought in. Or by turning down a cookie or two and doubling down on water when my BG is high, and explaining that.

Now, it would be easy to say I do these things because I’m a diabetes advocate, and because I want to set a good example. Because I can hopefully help someone who encounters another person with diabetes understand. All those things are true.

But I also do these things because I just don’t have the patience anymore to bring people along slowly on my diabetes. They work with me, they should know about the diabetes. I’ve survived 26 years with this condition. I think I’ve earned the right not to keep it to myself until I’ve made them comfortable enough to handle it.

Work is hard sometimes. Diabetes can be hard all the time. I like to think that people are stronger than we sometimes give them credit for. My new co-workers are nice.

My only advice: don’t sell your co-workers short. They can handle your diabetes. And if they can’t? Better you know now. Don’t give yourself overtime trying to figure out how to ease them into the diagnosis you’re already living with.

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.

Frustrated, but okay with it (sort of).

Do you ever experience a low where someone really goes out of their way to help you, when you don’t really need it, and it’s kind of annoying?

This wasn’t help during a low… this was, unfortunately, hindrance.

About three minutes earlier, I felt like I might be low, and tested out at 58 mg/dL. I started to eat some candy I keep in a jar on my desk at work. I suspended my pump, for what that was worth, and I was sitting quietly, not doing anything. Just concentrating on the one thing I needed to do in that moment, which was eat the candy (or, as some might call it, Stephen-eat-the-cheeseburger), and nothing else. Then someone came by, and noticed I was low. Before I knew it, I heard “Come with me… do you have something in your desk?… Here, I got your juice… drink it. NO, DRINK IT… NOW”.

My co-workers have come a long way in their understanding of diabetes, and especially their understanding of the dangers of hypoglycemia. But a few days ago, I came to the realization that there is a big difference between basic knowledge of highs and lows, and knowing about the nuances of diabetes.

I was definitely low in this instance. No doubt about that. But I was already treating, and as we all know, ingesting something now does not mean my BGs will come up at the very moment that fast-acting carbs are ingested. It takes fifteen minutes or so. Nothing I can do about that.

But it’s very hard for people who don’t live with diabetes to just sit there and wait, or even understand what it means to sit there and wait those fifteen precarious minutes. Especially when they’re worrying about you.

I have to tell you… it warms my heart to know that the people I work with are so eager to help when I hit a bad low. By the same token, it takes more than just literally shoving a juice box in my face and expecting me to be okay. The truth is, I would have been okay eventually, even if I was the only one there.

The thing is, it’s easy for me to be frustrated, because my low wouldn’t have been so difficult had I been left to my own devices. I was sitting in a chair at my desk, eating candy. My pump was off. I knew it was going to take a bit, but I knew I would eventually be okay. I didn’t need the extra grabbing and juice shoving and holding the juice so all I had to do was drink it. I also could have done without the “It’s because he’s stressed… the stress is making him low” comments.

But… how can I be unhappy about the level of concern and effort put into this moment? In reality, I cannot expect someone who doesn’t live with diabetes to know the difference between what 74 mg/dL feels like, and what 44 mg/dL feels like. And they really wanted to help me. How can I complain about that?

In the end, for all of the frustration, it’s just another brief episode in life with diabetes. I need to go through the mental checklist, examine the moment, and see if there’s anything I could have done better. To not do that would be folly. If it turns out it was just one of those crazy lows that happens from time to time despite our best efforts at diabetes management, then I just have to let it go. And thank everyone who tried to help me.

And be happy that there are people who want to help when I need it, even if I don’t need it all the time.

What’s in your pigeonhole?

There’s always been a kind of up and down about my diabetes. Not just when it comes to blood glucose levels, but with everything. Work has been one of those things. Sorry that this is so long. Hope you’re still there at the end.

When I was first diagnosed, all the way through my first 15 years or so with diabetes, I didn’t really experience any clashes between my diabetes and my jobs. Later on, I had a few uncomfortable moments here and there, and for the last few years everything has been absolutely great. There are certainly reasons for all of this, and the reasons are probably not everything you would think of right away.

I should also mention that my A1cs were coming in pretty high during these years, when I was actually seeing doctors. I rarely tested my BGs. And I was on MDI (multiple daily injections); I didn’t start pumping until much later. So as long as I wasn’t running to the restroom every five seconds, there weren’t many outward signs of my diabetes at all.

Then I started the job I have today. That was around 16½ years ago. My A1cs were still in the 9s, but shortly after I started seeing a new endocrinologist who started me on Lantus. Now, my knowledge of diabetes was still practically nothing at this point, so I injected as prescribed, which was once per day. That’s it. The lantus did its thing, which was okay for a while. But my A1cs were still in the 8-9 range. And then, the lows started coming. Terrible lows. Lows that gave a new definition to hypoglycemia for me. Including a couple of bad ones at work.

After a couple of those events, I had to deal with internal conversations with my bosses. I have a hard time describing this, and after all this time I’m still not sure I can do a good job of it. I was called in, behind closed doors in one instance, and was asked “What are we going to do to make sure this doesn’t happen again?”. How do you answer that? Especially when your knowledge of your own diabetes is practically zero, but you think it’s not. Another conversation included a directive that because these lows seemed to be happening just prior to my normal lunchtime (not true, but they weren’t always aware of the other times), I was going to be required to go to lunch 45 minutes earlier than I had normally been going to lunch. Great… Let’s take the lunchtime issue out of the equation and add 45 minutes to the time I eat between lunch and dinner; I might go low right after work, but no one there will know about it because I won’t be there. Problem out of sight, out of mind. This was something no one else in my organization was required to do, and I was pretty unhappy about it, but what could I do? I had a really good job and people who depended on me. Plus, I was working with (and for) people who otherwise were very good, very nice people. I felt like I was running out of options, but didn’t know where to turn.

I muddled through a little longer. Okay, a few more years longer, before things began to change, and I think my co-workers started to see diabetes in a different way. Part of that involved a hypoglycemic event involving a co-worker who, until then, I was unaware had been living with diabetes. My boss came to me asking how I could help this person at that moment, while they were still trying to come out of it. I’m pretty sure they shouldn’t have shared the diabetes thing with me, but since they did, I shared what I felt during those times. I just started talking.

I told her about how hypoglycemia is a near-death experience, and how you can get this violent mental and physical swing between just wanting to survive, then feeling horrified that you’ve been such a bother to people who up to that point don’t know your diabetes and can’t hope to understand it on such a level, then wanting to prove how strong you are by going right back to work and performing like a superstar, all while feeling so physically weak that you just want to curl up in the corner and sleep for the rest of the day. This was the reward for coming back from the brink of extinction. And, oh, by the way, it might happen again tomorrow. You never know for sure.

I think that helped changed the perspective of how people at work viewed hypoglycemia, at least. My outward attitude started to change too. I started caring more about my personal survival and less about whether someone thought diabetes was a mark of personal weakness, or weirdness, for that matter.

Five years ago, I began to see a new endocrinologist, who for the first time, started to explain carb counts and blousing and updating basal rates based on exercise and eating habits. I started to check my BGs at regular intervals each day. I got off of the Lantus and started on Novolog. I started on an insulin pump, and my A1c started to come down.

Still, I felt pretty alone with my diabetes. Then my wife heard an interview on local public radio with someone who talked about an “artificial pancreas” and made me listen to it. I said, “Great, what do you want me to do about it?”. She said, “Find out about it. Someone online should be blogging about diabetes. Why don’t you do a Google search?”.

I did, and for the first time, I had that “Holy crap, I’m not alone… Holy crap, me too” moment. I began to learn even more, and talking to people living with and not living with diabetes. I remember having conversations with people at work and finding out that almost all of them were touched by chronic illnesses in one way or another. I had a conversation with one of my bosses where I was able to explain, and have understood, I think for the first time, that diabetes isn’t as easy as take a set amount of insulin, eat a set amount of food, exercise a set amount, and everything will be perfect. You can do everything the same every day for a month and have 30 different days’ worth of results. I learned how to say that from the diabetes online community.

I’m not sure what the moral of this story is. Sometimes I just need to write things to get them out of my head, you know? If there is a moral for me, it’s maybe that people act differently given different circumstances, and those circumstances are often influenced by things we’re unaware of at the time. I know I can’t influence every situation the way I want to. But I know that knowledge helps me deal with situations better, and I know that acting with empathy for all and perseverance through the difficult times can help me hold my head high even when the going is tough.

I read something recently about a workshop where a speaker was talking about acting with integrity in everything you do, and he mentioned that everyone gets pigeonholed at one point or another. His advice was, when you do, make sure your pigeonhole isn’t full of shit. The workshop was for new National Football League coaches and executives. Maybe the workshop should have been for existing coaches and executives. I don’t know. My question to you is:

What’s in your pigeonhole?

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