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.

Off to college with CDN!

One of the most impressive developments in the diabetes community in the last several years has been creation of the College Diabetes Network. As of this writing, CDN has established chapters that support students living with diabetes at 112 colleges and universities.

Their website is a treasure trove of information, on everything from preparing for college, to life on campus, to relationships, to student’s rights, and more. If I’m living with diabetes in the USA, and I’m going to college soon, I want to become a CDN member.

And if you are that person, or one of your kids is a young adult who will be transitioning to college campus life soon, there are a couple of really great resources available right now.

College Diabetes Network has produced booklets for students and parents that are designed to help them through the changeover from high school to university. These booklets are great for wrapping your head around everything you need to consider ahead of time. If you’re like me, there are probably a few items in there that you haven’t thought of yet.

But that’s no problem… because you can get your hands on the student guide or the parent’s guide (or both), absolutely free. Put together in part through a grant from Eli Lilly & Company (thank you insulin maker!), you’re going to want to have these in your hands, whether you’re headed to a campus with a CDN chapter or not.

CLICK HERE to go to the CDN website, where you’ll get a preview of the guides and a chance to request one of your own.

So to review: free guide full of useful information to help you begin life at college while living with diabetes. Sounds like a winner to me. To get all of the information, and to find out more about College Diabetes Network, CLICK HERE. Good luck!

5 Years. What now?

Over the weekend, I woke up and realized two things. Number one: I’m another year older. Number two: This blog is officially five years old.

This gives me pause, because of something I’ve been keeping (mostly) to myself all this time.

When I started writing here, I decided that I would just keep it going as long as I wanted to write. After all, this has always been part advocacy/part diabetes news/part personal diabetes journal. Then, when things got rolling a bit and it looked like it might be around for a while, I set an internal goal to keep going until I hit five years or 1,000 blog posts.

For the record, I’m at a little over 700 blog and podcast posts to this point. But I have definitely hit the five year mark. I’ve always known this couldn’t last forever. What do I do?

Now I’m at least forced to think about this thing… the end of this thing. After all, you can cover a lot in five years. The Dick Van Dyke Show lasted five seasons, and they had a pretty good run.

So have I, for that matter. I’ve told more stories and seen and covered more developments in diabetes, good and bad, than I would have ever guessed I would five years ago. I’ve tried to be as supportive as I can, while maintaining a fair amount of skepticism regarding the motives of researchers and industry executives. I’ve tried to retain my outrage for things that really matter. As you can imagine, the last five months or so have made that a challenging task.

Is this blog still relevant? Was it ever relevant? These are questions I’m asking myself.

I think I started this blog right at a time when many people flexed from just reading blogs to writing them too. Many diabetes blogs sprung up in the same year that mine did. Some are still around; some are not. Out of everyone who started a diabetes podcast three years ago, I think I was the last. Blogging is still relevant, definitely. And really, I just love podcasting. As for my blog and the podcast… well, I’m relevant to me. How’s that for self serving? I really hope I’ve been relevant to others as well.

When there’s a big development in the diabetes community, I’m rarely the first one to post something about it. Hey, I have a full time day job, you know? Bills are relevant too. When I’m not the first to tell a story, I try to really consider the subject at hand and write carefully, choosing to inform, agitate when necessary, and sometimes twist your head around to focus on something you might not have considered before.

I’ve been lucky enough to be in industry sponsored meetings, at symposia, and at FDA. I’ve attended many conferences and UnConferences, and written about them all. Not all of these events were specifically diabetes-related. It was a privilege to cover all of them. I’ve also been around just long enough now to see new faces in these gatherings, and I have to say that it’s very gratifying to know that there are many passionate advocates out there, learning, and possibly surpassing, anything I’ve ever done. I never worry about what I cannot get to. It’s both a sad and wonderful thing that there are far less spaces for advocates at these things than there are advocates to fill those spaces.

Speaking of advocacy, there has been a lot of it over these last five years. Participation in community initiatives like Strip Safely, and volunteering for Diabetes Patient Advocacy Coalition. Speaking at an FDA workshop on the importance of improving the landscape on interoperative devices. Speaking April 1st at the March for Health in Washington. Still, I wonder if I’m really a good advocate, or if I’m not as great as I’m making it sound. Despite how wimpy that last sentence sounds, I think it’s good that I question myself on this from time to time.

Photo courtesy of Bennet Dunlap


There are things I’ve written about that I haven’t posted. If you see me in person, ask me about a New York Times reporter referring to diabetes devices like insulin pumps as gadgets in a front page story. My answer might surprise you. Or ask about the amazing health initiative in Las Vegas that I visited back in 2015. I was so impressed, but haven’t been able to publish that one yet.

And boy, have I had some awful blog posts. A review of sugar free Peeps? I hate marshmallow, which is why I had family and friends taste test them. That’s something that should have never been published.

On the other hand, there have been wonderful moments, like when I wrote a sort of love letter to the Diabetes Online Community. That is still the most viewed thing I’ve ever published. And OMG, we’ve given away over 80 Champion Athletes With Diabetes medals. Do you want to feel good? Reward someone for their hard work.

And there have been some personal posts here too, usually from vacation, and the occasional recipe. I’m trying to perfect a couple of new recipes, and if they turn out well, you can bet I’ll share them here. Life can’t be all basals and boluses, right?

So yes, in the end, I’m going to keep writing. I know I have more to say, more to cover. No more goals, though if I reach 1,000 blog posts I’ll likely go through this exercise again. At the rate I’m going, I have over two years to go to get there.

Also, and this is important: I know it sounds hokey, but I can’t wrap this up without thanking all of the wonderful people who have commented, given me encouragement, informed me about what I got right and what I got wrong, and made me feel like this whole exercise has been more than worth it. Thanks to the people who felt that telling their story to me was worth it to them. Thank you to our Champion Athletes With Diabetes medal winners who inspire me always.

Our lives, and our lives with diabetes, are not all the same. I’m a true believer in the notion that our diversity makes us stronger. Thank you for looking in on my life with diabetes for five years. I hope to continue to be worthy of your attention for the foreseeable future.

Sign up for these public meetings.

Hello…. I hope everyone’s week has been grand. For me, life has been a series of meetings and appointments and lots of work. While I have a moment, I want to let you know about two upcoming meetings that offer both educational and advocacy opportunities.

On April 26 and 27, there will be a meeting at the offices of the National Institutes of Health in Rockville, Maryland. The National Institute of Diabetes and Digestive Kidney Diseases (NIDDK) is chairing an interagency coordinating committee meeting where, in this case, they will be talking about prioritizing Type 1 diabetes research.

Like so many meetings, this one is open to the public. There will not be an opportunity to make public comments in person, but there is a way to e-mail your concerns ahead of time. Then, if you are able, you can go to the meeting and be the eyes and ears of the community, so to speak. We need that sort of thing in these forums.

To find out more, and to register, CLICK HERE.

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On May 12, there will be another public workshop at the U.S. Food and Drug Administration. This one is specifically advocacy-based. In this workshop, attendees will get direct input from FDA staff on the roadmap for approval of new drug therapies. You’ll get tips on how to make your voice heard in the approval process. And you’ll get additional information on how FDA uses the patient voice to help make informed decisions, while protecting patient safety.

This is a great opportunity to learn how the sausage is made. Metaphors! I’m full of metaphors today!

The workshop takes place at the FDA’s sprawling White Oak campus in Silver Spring, Maryland on Friday, May 12. To find out more, and to register, CLICK HERE.
 
 
That’s what’s happening near where I am… what’s going on in your part of the world?

March for Health

I’m one of the lucky people in this world who has a Monday through Friday job. Every weekend off. Nevertheless, ten, fifteen years ago, I spent many Saturdays getting up early, getting to the office, and working for four to six (or even eight) hours. I was convinced that there were many things to do, and the quiet Saturday surroundings would help me tackle those without the distractions of the phone or people coming to my desk all the time. It was a lot of extra work for exactly zero reward. It’s a long story about how I got here, but I’m happy to say that I don’t do that anymore.

Instead, this past Saturday, I got up early, drove to the Washington, D.C. suburbs, and caught the Metro into the District. I am even happier to say that this effort was more than worth it.

Photo courtesy of Dirk Gassen


Saturday, April 1st marked zero hour for March for Health, the culmination of a nationwide effort to rally for health care as a human right. In cities large and small, people gathered, signs in hand, purpose in mind, to share their concern that the discussion on health care needs to result in affordable, accessible, equitable care for everyone.

I was a very small part of the D.C. march, which made its way to Upper Senate Park on the grounds of the U.S. Capitol a little after 12:30 Saturday afternoon. I was fortunate enough to speak for about six and a half minutes, trying to help the audience focus on the fact that there are many of us out there living with chronic conditions, and collectively, we are making a difference. The text of my speech is at the bottom of this post.

But first, I want to congratulate march organizers, two of whom were interviewed here last week on the podcast. Many of the march leaders had never put anything like this together before. Wherever they were, they worked extremely hard to gather volunteers, keep everyone informed about places and times, get parade permits, do outreach, and solicit media coverage. When you consider where this movement started in late January, their accomplishments have been astounding. I couldn’t be prouder to have been a part of what they created.

One more thing: I fear we will need more marches, more e-mails, more people speaking about the importance of getting the insurance, care, drugs, therapy, and the rest that all of us living in my country deserve. In that respect, March for Health is just a beginning, but an important beginning, and a clear indication that there are many who are willing to stand up for what’s important to everyone.

Now, the speech. I’m including a couple of extra photos of my own after. If you read this space regularly, you might notice that I plagiarized myself a couple of times here. I started out talking about my diabetes, but tried to bring it around to the fact that everyone lives with or loves someone who lives with a chronic condition like mine. As a unified group, we can affect policy, and even elections. Here we go:

Hello… my name is Stephen Shaul.

I’ve lived with Type 1 diabetes for 26 years. My daily life is an endless stream of glucose checks, math calculations, and insulin injections. I wear an insulin pump and a continuous glucose monitor. I see an endocrinologist, who devises strategies to help me live the best life I can with this disease.

But you know, that doesn’t make me unique in this country. More than 29 million people in the United States live with diabetes. Heck, as chronic conditions go, I’m not even unique in my own family. My spouse lives with A-Fib, my mother lives with COPD, my father is a cancer survivor. One of my brothers in Ohio has five children, one of which lives with Asperger’s Syndrome. In fact, three of his kids have tested somewhere on the autism spectrum.

And that’s the thing. You know, I’ll bet that if we could somehow get all of America into one room and ask the question, do you or a loved one live with what some would call a “pre-existing condition”, just about every hand in the room would go up.

That’s why there was so much resistance to the American Health Care Act. People from every part of the health care spectrum weighed in to say that regardless of their political leanings, they and their loved ones come first. With one loud voice they stood up and said, when it comes to what’s really important, people are always more important than profit.

All over this country, Republicans and Democrats have children living with diabetes. Liberals and Conservatives have spouses and partners who have to manage their rheumatoid arthritis every single day. In every corner of this land, card-carrying members of the GOP, and the party of the New Deal, and Independents too, have parents who need and deserve access to things like flu shots and mammograms.

So when the opposition began to build against AHCA, it wasn’t all based on opposition to repeal and replace. It wasn’t all about policy and tax credits.

Instead, it was opposition to taking away protections for our loved ones, shoving them into high-risk pools that would cover very little, if any, of the drugs, treatment and technology they are afforded today.

It was opposition from people who already pay thousands of dollars per year to stay alive, saying that they shouldn’t have to pay thousands more for premiums, then pay even more on top of that because those premiums wouldn’t cover as much as they’re being covered for today.

It was opposition to, as our Nashville march organizer told me this week, being one lab test result away from being deemed uninsurable.

When the people most dear to you are in danger of losing their protections of access to treatment, insurance, drugs, and therapy, we all understand: the stakes are life and death. What’s been missing from lawmakers is the acknowledgement that those who do want to repeal and replace, and those who don’t want to repeal and replace, all have children, spouses, partners, and parents who need and deserve care. We all have the same needs, and the number one need of all is to keep ourselves and our loved ones alive. The number two need is to stay as healthy as possible without going broke.

So you know what? We’re not unique! There are millions upon millions upon millions of us in this country. Together, we made the phone calls, we sent the e-mails, we attended Congressional town hall meetings. And our efforts worked. Our elected officials responded. They pulled the legislation.

And if we have to, we will do it again!

Now, we’re hearing that the people who work in this building behind me are considering another try at health care reform. As they do, we need to be sure they understand that if they’re talking about doing something different with health care in the USA, the end result MUST BE BETTER for all Americans than the law it seeks to replace. All Americans, including and especially the millions most affected by changes to existing law.

No, we’re not unique… but we’re powerful. We can and we have influenced Congress. We can sway elections.

So… when Congress starts talking about “repeal and replace” again, make sure they know:

It cannot be repeal and deny.

It cannot be repeal and bankrupt.

It cannot be repeal and left for dead.

Last time I checked, people weren’t dying in the streets from Obamacare. Hospitals aren’t going bankrupt due to the Affordable Care Act. As the debate on health care goes on, let’s remember those most dear to us, who might also be living with a chronic condition. For me, that’s my wife. My parents. My nieces and nephews. My friends living with chronic conditions. If their needs aren’t met, my needs aren’t met.

Let’s face it: We’re now talking about cars that can drive themselves and using drones to deliver packages to our homes. Meanwhile, lawmakers have relegated healthcare to a yes you can, no you can’t series of decisions like a political football. Friends, that’s 20th Century thinking in a 21st Century world. And it’s a 19th Century way of thinking when it comes to doing what is best for the people living with chronic conditions like mine.

Let’s remind those who still don’t get it that any new healthcare legislation needs to provide more care. It needs to cost less. It needs to help save more lives. As the debate on health care continues, let’s keep the focus right where it belongs: on American lives.

Thank you.

The beginning of the D.C. March for Health, Lincoln Park, Capitol Hill


Marchers chant their way down East Capitol St NE toward the U.S. Capitol


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