Skip to content

Posts from the ‘Diabetes Community’ Category

Photo Challenge: #DOCtober.

Taking pictures is something I like to do very much.  I’m not terribly talented when it comes to doing it and my equipment is pretty basic, but I enjoy framing something up and preserving that moment.  I used to take a lot of pictures, but I’ve tapered off in the last few years, and I miss it.




I am forcing myself to get back behind the lens with a daily photo challenge for October.  The twist – BET YOU DIDN’T SEE THIS COMING – is to see if I can find something diabetes-related to photograph for the month.  If I can, awesome.  If I can’t, that inability shows how diabetes can’t and shouldn’t always be front-and-center.

Want to join me?  I’ll be posting on the blog and Instagram under the hashtag #DOCtober.

For #DOCtober 1/31, I’m already cheating a little by posting a photo from last week.  The sign reads, “Unusual Pumpkins + Gourds.”  And it reminded me of you guys, the diabetes community.  The patient community.  The community of people who are touched by some kind of health condition but aren’t owned by it and are beautiful because of and despite it.

Well sheeeeeeeeet, if we aren’t all a pile of beautifully unusual pumpkins and gourds.

Guest Post and Giveaway: Overcoming Diabetes Overwhelmus.

Today, I am honored to have Susan Weiner and Paula Ford-Martin contributing a guest post to SUM, writing about diabetes burnout and their new book, Diabetes 365: Tips for Living Well.  I’m pretty biased, as I used to work for Paula at dLife (and with Susan), but their book and their message are a tremendous resource for newly diagnosed and veteran PWD alike. 

I’m also excited to host an opportunity for three folks to win a copy of the book.  To enter to win, please leave a comment with your best tip on dealing with “diabetes overwhelmus.”  (Be sure to include your email!)  The giveaway will be open until Thursday night at midnight EST, and winners will be announced on Friday morning. 

*   *   *

Overcoming Diabetes Overwhelmus
Guest bloggers Susan Weiner and Paula Ford-Martin

The late, great Dr. Richard Rubin had a great knack for turning a quality phrase. “Diabetes overwhelmus” (a.k.a. diabetes burnout) was one of our favorites. Layman’s definition? When the continuous demands of diabetes, and the non-stop flow of diabetes-related information, simply become too much to deal with and you’re ready to throw up your hands and have a mad as hell moment.

The side effects of diabetes overwhelmus are a tendency to become less active in one’s own self-care. So diabetes management starts to slip, stress goes up (along with stress hormones and blood sugar), and then you’re caught in a vicious cycle of bad feelings – both physical and emotional. It’s a crappy place to be.

Now we want to take a moment to pause for a disclaimer here. We both work in diabetes, we support friends and family with diabetes, and we know a lot about the academics of the disease. But neither of us can say we have the intimate knowledge of knowing what it’s like to live with diabetes 24/7.

But stress, the broader idea of “life overwhelmus,” and the negative impact both have on the human body? We’ve got loads of personal experience there. The busier life gets, the harder you need to work to maintain your physical and emotional well-being. Yet most of us let life’s obligations push those things down in the priority list. And even though we’ve both worked in the health education field for many years, we admit we have let stress get the better of our health and well-being more than once in our lives. In fact, we wish there was a frequent flyer program for hospital visits and doctor’s appointments – we’d be Platinum Club Members.

A survey on stress in America found that almost half of the population has experienced a major stress in the prior twelve months, and health problems were cited as the most common source of stress. Thirty-six percent of people living with a chronic illness reported high stress levels in the prior month, with a whopping 60 percent of those in “poor health” reporting those same high stress levels. That’s probably not a surprise to anyone reading this blog post. Being “sick” makes you stressed, and stress makes you sick.

Susan has a patient, Tess (not her real name). Tess has type 2 diabetes, works full-time, takes care of a family, parents teenage children, and is the primary caregiver for her live-in mom, who was recently diagnosed with Alzheimer’s disease. Over time, she found herself completely overwhelmed and bombarded on all fronts. Eventually she stopped taking care of herself. She ate food on the run, sometimes skipped her meals completely, didn’t refill her medications, and didn’t keep doctor appointments.

Tess felt terrible and had high blood sugars. But she went to visit Susan because she was ready to take one small step to get out of her diabetes rut. Susan listened to what Tess’s biggest stressors were and her desire to address them, and they started with one simple goal focused on an issue plaguing Tess – taking time each night to pack up snacks and plan the next day’s meals. Over time, they added more small goals based on Tess’s real life problems, and now she feels in control of her life and health again. She isn’t eating out of frustration or anxiety, and is starting to gain better control over her blood sugar.

It was this small step approach that inspired our latest project, Diabetes 365: Tips for Living Well (Demos Health, 2015). We wanted to help people like Tess come at diabetes from a less intense, more manageable angle. Our intent was not to offer a soup to nuts guide on treating your diabetes; instead each day of the year offers a new start and a focused tip, idea, or action you can take to improve your health and happiness. In other words, it’s not the OED of diabetes, it’s daily Cliff Notes. As our friend Jim Turner says, “Diabetes is complicated and overwhelming enough. I like simple, straightforward suggestions.”

“Bite sized” diabetes goals may be your way out of diabetes overwhelmus. Or, you may find relief in other ways – diabetes support groups, meditation, or reading a daily dose of inspiration here at SUM. But at the root of it all is not letting life get in the way of living, and finding a way to co-exist with all of those personal, professional, and diabetes challenges. In the words of our gracious host Kerri: “I need to remember that I can do this. I can conquer this. I can design this and devour this and delight in this.”

*   *   *

Susan Weiner is owner of Susan Weiner Nutrition, PLLC, in New York. She is an award-winning author, registered dietitian-nutritionist, and certified diabetes educator. Susan is the 2015 AADE Diabetes Educator of the Year, the 2015 Diabetes Health Monitor LifeChanger award winner, and the 2014 Alumna of the Year for SUNY Oneonta. She is also the 2015–2016 editor for On the Cutting Edge, a peer-reviewed journal for the Diabetes Care and Education practice group of the Academy of Nutrition and Dietetics. Susan advises several nonprofit groups devoted to diabetes advocacy; she is on the advisory board of Diabetes Sisters, and is an educational advisor for Marjorie’s Fund. She is also the diabetes medical advisor for and is on the medical advisory board for dLife.

Paula Ford-Martin is an award winning health writer, editor, and content producer. She is the author of more than a dozen consumer health and parenting books, and currently works as a freelance content strategist and consultant. Paula was part of the core team that created and launched dLife, a groundbreaking multimedia diabetes consumer resource. She served as the Chief Content Officer of dLife for eight years, and her work on CNBC’s dLifeTV—the first and longest running primetime diabetes television show—garnered her 26 Telly Awards. You can learn more about Paula and her work at


One More Sneaker.

This week, in my quest to become a Lady of Suburbia, I went to Marshall’s to pick up a lamp.  (I also bought pumpkin coffee beans.  Whilst wearing yoga pants yet not doing yoga.  In the middle of the day.  Forgive me.)

This visit was on the same day that I was sharing a #dayofdiabetes (peek in on the hashtag here), so diabetes was a documented focus.

The cashier was a nice lady who wanted to chat.  As she was ringing my purchases up, we both overheard the cashier next to her ask a patron if they’d like to donate to the JDRF.  “No, not today.”

“I hope some people say yes about donating to JDRF,” I said quietly to my cashier.

She nodded as she put my things into a bag.  “Yeah, most people say no.  I haven’t had a single donation yet today, but I had a few yesterday.   I always ask, though.  It means a lot to me.”

“Oh yeah?  Do you have a personal connection to diabetes?”

“I do.  My dad has diabetes.  Type 1, since he was about eight years old.”

“Really?  Me, too.  I was diagnosed when I was seven.”

She looked at my face, then her eyes drifted to my hip, where my insulin pump was visibly clipped.  “No kidding?  Is that your pump?”

“It is.  I’ve been pumping for about ten years.  I use a continuous glucose monitor, too.”

“My dad is old school.  He does the injections with syringes.  He’s had it my whole life.  He’s had some low blood sugars that I remember.”

“My daughter is five.  I bet she’ll have stories about my diabetes when she’s our age, too.”  I smiled at this woman who was the fast-forward of my own little Bird, a child without diabetes raised by a person with diabetes.  This woman’s understanding of my own day-to-day was intimate, and we had yet to exchange names.

As I paid for my purchases, she raised an eyebrow.  “Do I even have to ask if you’re donating?”

I shook my head.  “Nope.  Count me in for a sneaker or two.  One for me, one for your dad.”


Slightly Charred.

Diabetes burnout and social media burnout have a tendency to go hand-in-hand for me because it becomes tiresome to document my failures.

“No, the failures of your pancreas,” said a friend.

Nope.  The failures of me, pancreas and all.  I can’t separate the two.  Diabetes challenges me emotionally and physically because I am lucky enough to deal with a disease that offers me a fair amount of control … which translates into a predictable to do list.  As much as I try to reduce my level of responsibility when it comes to this crap, I have to own my role in this disease.  It’s not something I could have prevented, but it is something I have to deal with.  I look at other health issues in my life and realize how little influence I have over them.  And then I look at diabetes and I’m forced to acknowledge that this disease is a confluence of intention and reaction.

Writing about diabetes has become hard some days.  It used to feel good to write about a low blood sugar and get that story out there because it felt like a purging of bad feelings, and the flood of “me, too!” moments made the edges of frustration softer.  Now there are moments when sharing feels pointless; no one needs a reminder of why my disease can be a pain in the ass … least of all me.

I have good intentions.  I intend to take care of myself, and despite the variables that influence diabetes outcomes, I make efforts.  (I exercise.  I eat well.  I don’t smoke.  I am proactive with my medical appointments.  I check blood sugars and take insulin.  I list things that seem smug, like the aforementioned list.)  But diabetes is still diabetes, and I am still reacting to the disease a fair amount of the time.  Reacting to a low (eat something!) or reacting to a high (bolus!) or reacting to a skin irritation (Toughpad me) or reacting to frustrations related to the diagnosis of complications (eyeball fuckery) or reacting to the underlying theme of always hoping for the best and yet being pragmatically prepared for the worst.

Community helps me process this stuff.

Community is a good way for me to manage my emotional health as it relates to diabetes (directly).  Connecting with peers helps me find my footing in moments when I feel like diabetes is dominating.  But that sounds so formal, like secondary headline on a journal article.  The diabetes online community and all this blogging stuff has given me so much in terms of emotional health success.  So what am I doing, writing about social media burnout?  I actually feel stupid saying that there can be burnout from social media, even though I know there can be.  It just feels like the most first world issue there ever was.  Almost like having too many pairs of sturdy shoes – “I simply cannot manage all of the opportunities that are available to me!  Woe is my woe-crammed self.”

So am I burnt out?  Or just slightly charred?  And do I need someone’s permission to voice this issue?  (No.)

Sometimes I question my decision to (over)share so much of my diabetes process in a public setting.  Putting information out to the Internet invites strangers to comment and critique, which is productive when the discussions are empowering and awful when the discussions are cruel.  I’ve had a lot of positive experiences overall via the Internet but it’s been a mixed bag at times.  Which I’m not surprised about – not everyone will like everything, or support everything, or spell everything correctly – but at the same time, it surprises me when I see people rip others apart for their shortcomings or vulnerabilities.  Watching people run commentary that’s hurtful detracts from the nice, mellow community vibe that I appreciate most.  Basically, sometime people (myself included) are dicks, and I hate when that happens.  It makes it harder to share openly and to support.  As the years go by, I want to share less because I want to protect my right to fuck up.  It’s a weird halfway, because the moments where I fuck up are the ones I need the most support during.

So what’s the point of this post?  Here you go:  On September 1st, the team at Diabetes Daily wanted to generate some discussion about social media burnout.  And I hope people talk, because discussions like these make our community stronger.  Or at least that’s the goal.

It’s not about curating a perfect online existence; it’s about living a real, healthy life even with the raw and ragged edges.

Panel: Challenges in Healthcare Leadership.

Yesterday, I took part in a panel discussion at the Executive Master of Healthcare Leadership Class of 2017 Convocation at Brown University (say that three times fast … I sure as hell can’t) and part of our discussion was about leadership in the healthcare space.

My fellow panelists were folks who were employed in the healthcare arena (Michael Hudson, EVP of Blue Cross Blue Shield, Secretary of the Executive Office of Health and Human Services Elizabeth Roberts, President and CEO of Care New England Dennis Keefe, Director of Alnylam, Ironwood, Momenta Pharmaceuticals Marsha Fanucci … and me), and I thought about who I work with:  medical device companies, diabetes advocacy organizations, magazines, publishers, etc.  I like the work that I do and I like the organizations I work with.

But, but, but.  Who do I work FOR?

The people I work for are people touched by diabetes, and to be honest, that starts with me and my family.  (My oxygen mask on first, right?)  One of the attendees yesterday asked me what kind of advocacy work I did as a kid with diabetes, and I admitted, “None.  I decided to get involved when I was in my mid-20s.  Before that, I didn’t do much at all in terms of diabetes advocacy.” It took time for me to grow into a desire to connect, and that desire was driven by isolation.

I joined this community because I didn’t know anyone in my day-to-day who was dealing with diabetes.  That absence of community drove me to seek out my peers and find people with whom I could be weird together.  And now this community of like-pancreased people can lean on one another and learn from one another in ways and about things that healthcare professionals aren’t able to provide.

Spent some quality time yesterday with the EMHL class of 2017 at Brown University. #rhodypride

A photo posted by Kerri Sparling (@sixuntilme) on

I spoke about the positive influence of patient communities a lot yesterday.  When discussions turned to the silos of healthcare and the dissemination of information, I advised people to take cues from patients who are sharing their stories online for a how-to.  “If you want to see information that’s crowd-sourced and self-policed, hopefully without a whole bunch of egos and competing interests, the online patient communities can give you some tips on how it’s done.  It’s not medical advice but it is honest and shows what illness looks like in the wild.  Patient communities take information from medical teams and integrate it into real life, with better health outcomes as the goal.  And that’s what we all want, right?”

Discussions about “what makes a good leader” took up the better part of the afternoon discussion, and I leaned heavily on bursting the bubble of privilege.  “My job as a voice in this community is to recognize what I have access to and what others are striving to gain access to.  My refrigerator is stashed with bottles of insulin, while some of my fellow people with diabetes are panicked about where their next injection will come from.  I need to remember that and raise their voices, whenever I can.”  (See also:  Spare a Rose.  See also also:  CGM Medicare Coverage.  See thrice-so: DPAC)

I’m hopeful it was an interesting panel discussion to listen to; I learned a lot by listening to my fellow panelists.  Secretary Roberts repeatedly voiced concerns about the different factors that play into health (socioeconomic, literacy, etc) and urged discussions about improving society’s views on proactive health efforts instead of reactive ones.  Dennis Keefe voiced hopes for true universal healthcare and how we can transition to that system most effectively.  Michael Hudson made an excellent point about throwing bias and stigma aside when communicating with one another; we aren’t just “the insurance guy,” or “the patient.”  Each panelist brought their unique flavor to the discussion, and I did my best to inform this EMHL about the crucial need for input from patient perspectives.

One of the other panelists mentioned that high deductible insurance plans force patients to have “skin in the game,” but I’ll counter that being responsible for paying doesn’t give us skin in the game.  We’ve always had skin in the game.  Now we have a voice at the table, and it’s high time we raise it for the betterment of our communities.

I’m proud to work with diabetes organizations, but I’m prouder still to work for people with diabetes.  This community, and all perspectives in it, have improved my life and my health in ways I’ll spend the next few decades gratefully and respectfully repaying.

Entering the Mancave.

There are issues we talk about openly in the diabetes community – tips on how to wear a pump, resources for good diet and nutrition, exercise goals, frustrations with blood sugar control, research, and on and on.  All of these topics matter because they play a role in diabetes management, and life as a whole.  But some of these topics are easier than others.  It can be easy to say, “I suck at counting carbs and I need help!” but it’s another discussion entirely to give voice to, “I’m dealing with reproductive issues and I need support.”

Those personal issues need discussing as much as the topics like counting carbs.  Complications are delicate.  Fertility is delicate.  Sexual issues are delicate.  Depression is delicate.  These topics are raw and riddled with social stigma, but they need unpacking.  Otherwise, they get heavier, already heavy all their own.

I remember when I first read about a woman who had given birth after decades with type 1 diabetes and it soothed a panic in me that was there for years, that idea that motherhood was beyond my grasp.  It was a moment, a good moment, that helped change the course of how I approached becoming a mother.

But I also remember the first time I found stories from people in their 20s and 30s who were dealing with diabetes-related complications.  This moment was good in a completely different way.  My diagnosis of macular edema in 2013 generated more than just a new medical condition to manage, but stirred up all these feelings of failure, guilt, and blame … a deluge I wasn’t really prepared for.  These emotions aimed to drown me.  I wanted to hide.  I had very dark, very uncomfortable thoughts that took me away, in a sense, from my friends and family.  I needed support, and am grateful that I found it.  Conversations with peers about dealing with complications at a point when I still felt young but realized how many decades of diabetes I’d logged helped me get through the initial diagnosis and kept me on the path of taking care of myself in order to preserve and protect, but also to continue living despite this new diagnosis.

“Me, too!” stories can help do that.  They confirm that you aren’t alone in what you’re dealing with and that there is support and camaraderie available even in the darkest of times.

I wanted to share a new website called The Diabetes Mancave, created by a writer who has decided to remain anonymous but not to remain silent, and his website is hosting discussions about the topics of male infertility, retrograde ejaculation, and erectile dysfunction, among other things.  From the site:

“You’re not going find my real name here. That’s because this isn’t something I am comfortable sharing online with these issues, because they are very personal and not something I’m comfortable letting everyone tie to my name.

But that aside, this also isn’t about just me. It’s about these issues, and the larger point of how so many men who may be experiencing these, just don’t share because they aren’t comfortable talking about them.

… In a Diabetes Community where we so often tell each other “You Are Not Alone,” I certainly do feel alone.

I’m hoping the D-Man Cave can help remedy that, to some extent. Because I don’t want to keep this in anymore, and I don’t want to feel so alone.”

Discussions and blogs (and Twitter profiles) like his are long overdue.  I’m really sorry you’re dealing with these issues, Diabetes Mancave guy, but I am so, so grateful you are putting them out there.  I hope you find community and support because by putting your story out there, you’re potentially providing a life preserver for someone else.  Thank you for being brave, and encouraging others to be brave, too.

The Emerging Diabetes Online Community.

I’m really proud of this paper, The Emerging Diabetes Online Community, written with Marisa Hilliard, Jeff Hitchcock, Tamara Oser, and Korey Hood, about the diabetes online community and the importance of peer-to-peer support between patients on the Internet.

The official abstract: “Diabetes self-management is complex and demanding, and isolation and burnout are common experiences. The Internet provides opportunities for people with diabetes to connect with one another to address these challenges. The aims of this paper are to introduce readers to the platforms on which Diabetes Online Community (DOC) participants interact, to discuss reasons for and risks associated with diabetes-related online activity, and to review research related to the potential impact of DOC participation on diabetes outcomes.”

There are a lot of friends and colleagues mentioned in this paper, like Children with Diabetes, Scott Johnson, Diabetes Mine, Texting My Pancreas, the CGM in the Cloud group, and several others.  Actually, that’s one of my favorite features of this paper, noticing how many of these resources are created and maintained by people I consider friends.  Speaks to the true connectivity of the Diabetes Online Community and how what we provide for one another is hard to quantify but easily recognized as “important.”

It continues to amaze me, seeing how much this community has changed and grown and evolved since I ventured online ten years ago.

To download the paper, you can click on this link and the PDF is free.


Get every new post delivered to your Inbox

Join other followers