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Posts from the ‘Psychosocial Support’ Category

What Does the DOC Mean to You?

Two weeks ago, the #dsma chat was centered on the how and why of people’s participation in the Diabetes Online Community (DOC), and after chat participants shared what brought them to the web for diabetes information, the last question of the night asked them what the DOC means to them.

The answers created a quilt of community and comfort that can’t be denied:

And for me?

Tune in to tonight’s #dsma chat at 9 pm EST. For information on how to get started with Twitter, jump back to this Diabetes and Twitter 101 post.

“Do you wish you didn’t have diabetes?”

“Hang on two more seconds, kiddo.  I need to check my blood sugar before we go.”

She watches me casually as she slides her arm through the sleeve of her sweatshirt.

“Mom, do you wish you didn’t have diabetes?”

She asks me this question all the time now.  While diabetes is not a secret in our house, it’s not a hot topic of conversation.  Instead, she sees what my pump looks like and knows what my Dexcom does, and she likes to push the button on my lancing device to deploy the needle when I need to check.  She knows that glucose tabs are for low blood sugars and that I apologize for being unreasonably grouchy when my blood sugar is frustratingly high.  A few times she’s seen me cry because I was low, but I try to explain to her that it feels bad in the moment but then I feel okay.  Most of this becomes threads in the fabric, but lately, she’s been asking me that one, specific question on repeat.

“Mom, do you wish you didn’t have diabetes?”

My answer is generally the same every time, because I don’t want to lie to her.  I am not filled with diabetes-loathing, and even though this disease is the single biggest negative issue I deal with every day, I don’t feel entirely devoured by it.  But I don’t fucking like this disease.  It’s a complicated half-way.  There are moments that are compromised, but my life as a whole is not.

“I don’t like having diabetes, but I’m fine.  I like having you.  And having Daddy.  And having Looper and Siah Sausage,” and then I deflect to something else because I don’t want to have long, drawn out discussions with my introspective daughter who has already queried me about how many birthdays people have left.

I think about how diabetes is something normal to her, and always has been.  Moms wear insulin pumps, and it furrowed her brow for years that my friends here at home don’t have a pump clipped to their hip.  Moms carry purses filled with crayons and hand wipes for kids, and then a jar of glucose tabs for when the car is hard to find in the parking lot.  Mom’s bike basket has a bottle of water and a Dexcom receiver in it.  Moms sometimes say, “Let me check my blood sugar first,” before going outside to play.  This is her normal, too.

“Mom, are you glad I don’t have diabetes?”

“I am glad you are exactly who you are.  If you ever get diabetes, we’ll handle it.  When it comes to cookies, we’re the toughest,” and I breathe out as slowly, slowly, slowly as I can.

Seeking PWD Peers.

Two weeks ago, I was in Vienna for the third annual European Animas Blogger Summit.  (I’m a blogger, and I have a working relationship with Animas.  Only missing the European part, and I can’t even pretend because I was once told that my attempt at a British accent was akin to Dick Van Dyke’s Mary Poppins attempt.  So, no.)  Other folks who were in attendance have written about their impressions and take-aways, but the discussions we had can’t be concisely covered in a blog post.  It would take several blog posts.

So, in keeping with that theme, this blog post is centered around one of the discussions that embedded itself into my head:  connecting with PWD who are living with type 2 diabetes.

It started with a conversation about the #walkwithd campaign.

“The Walk with D campaign is about showing people what diabetes is really like, peeling back the stigma and reinstating dignity.  We do this already through blogs and Twitter and Facebook updates and all of the photos we share with our community and society as a whole.  The hashtag is simply a way to link some of these discussions, and to share more.  But, in looking around the room, I see a lot of kindred spirits who are dealing with type 1 diabetes.  Where are the type 2 voices?”

I don’t know much at all about life with type 2 diabetes. Sure, I can look it up on dLife or WebMD or some other resource that gives a high-level definition of type 2 diabetes, but that doesn’t give me a sense of what it’s actually like to live with type 2 diabetes.

My lack of perspective used to be rooted in straight up ignorance.  Diagnosed with type 1 diabetes as a child, I actively sought to separate myself from my type 2 peers because I didn’t want people thinking “I did this to myself.”  And I have to put that statement in quotes because it’s such a crummy one, now that I know so much more about the differences and similarities between all types of diabetes.

It’s difficult to talk about how I felt when people lumped type 1 and type 2 together.  I’m embarrassed to admit these things.  The diseases are different in their origin but so similar in how they map out physically, and more importantly, emotionally, and I wish I had known that earlier.  I wish I had been more supportive of my type 2 peers.  I wish I had known how they felt.

And that’s the part I truly want to better understand.  How does it FEEL to live with type 2?

Rachel at Refreshing D was one of the first people who had type 2 diabetes who I really got to know.  Through her columns at dLife, her blog, and through becoming friends, I had a reliable window into life with type 2 diabetes.  I don’t know if I can properly articulate how much she has taught me, or thank her for being brave enough to share her story.  With Rachel as my gateway to understanding type 2 diabetes, I connected to and learned from people like Travis, Sue, Kate, and Bob.  People who live with diabetes – just not the type I’m familiar with – but who I need to better understand in order to best understand this community.

“I wish more people with type 2 would raise their voices.  How can we encourage them to?  How can we empower them to?”

The discussion during the blogger summit was frustrating in that none of us had a clear answer, but we realized that the responsibility for creating an empowering and inviting environment was on the DOC, both globally and in our respective countries.  We, as people with type 1 diabetes, are smaller in number in society but we tend to dominate the Diabetes Online Community, and I think it’s up to us to help pave the way for people with type 2 diabetes to feel comfortable coming out of their diabetes cave and sharing their perspectives.  Stigma runs rampant regarding diabetes, but we can help change it from the inside by getting to know our peers.  Finding what unites us can help us better understand one another as people and can help us all feel like we’re part of a community that has our back.

If you’re living with type 2 diabetes and you’re reading this post, please share your journey.

I walk with diabetes, but I don’t walk alone.  And neither do you.

You Are HERE.

Why are you here?  Why do you read diabetes blogs?  What made you want to start a Twitter account and participate in diabetes chats?  What makes you want to attend diabetes conferences?  What inspires you to organize meet-ups with local PWDs or advocacy walk teams?  How come you read diabetes articles and news sites and magazines? Why do you want to connect with others who have diabetes?

Why are you HERE?

I’m here because I have diabetes.  My impetus for starting a diabetes blog was because I didn’t know anyone else “in real life” who lived with type 1 diabetes and that feeling of isolation was starting to gnaw at me as much as my fluctuating blood sugars.  Back in 2005, there weren’t a lot of people sharing their stories, so I connected fiercely with the few who were.  (And if you’re wondering, I do still talk with Dee, and Violet.  I miss Tek and haven’t heard from her in ages.)

Before the diabetes online community was a “thing,” I felt like the only diabetic in the universe.  It felt good to be proven wrong, over and over and over again.

I started this site because I wanted to find some kindred spirits.  And that’s the reason I continue to write, and to try and connect.  It keeps the loneliness of chronic illness at bay and makes doing this diabetes maintenance thing easier.  Even though so many healthcare professionals think that my A1C is the most important marker of my success as a person with diabetes, I think my happiness is, and connecting with my PWD peers keeps me happy.

It’s a personal preference thing, and that’s my personal preference.

There are people who understand what you’re going through.  That’s the whole entire point of the Diabetes Online Community, to give us that “me, too!” moment that helps make diabetes suck less.  You are not the only person living with diabetes, or caring for someone with diabetes.  You are not alone.   The point is not pageviews or advertisements or conferences or “perks.”  If that’s why you’re here, I wish you all the best, but that’s not why this community started, or why it continues.

There’s no “how to” list when it comes to engagement.  You just have to DO.  Do it.  Engage.  And just as with diabetes (or with life in general), it’s important to manage expectations.  Give yourself time to find that kindred spirit, those PWD peers.  Feeling connected is not as simple as logging on, but becoming part of the discussion, however big or small.  Please remember that your voice is important, and it doesn’t matter how many people are “reached.”

The point is connecting with your own, personal community and you are at the very center of that experience.  It’s about you being reached.  It’s about you.  YOU.

Walk with D: Join My Diabetes Journey.

How can people without diabetes understand what living with diabetes is really like?

This is why I have written this blog for almost ten years – to connect and share with my peers, but also to educate those who don’t exist in the diabetes bubble.  The DOC shares so much about their personal lives with diabetes in efforts to find community, empathy, and that whole, “Me, too!!” vibe.  But even within the diabetes community itself, there are levels of misunderstanding, misrepresentation, and mistaken messaging, often creating a divide where there should be a bridge.

By increasing understanding and empathy, we can work together to raise the visibility of real life with the ‘betes.  And the aim of the Walk with D campaign is to help peel back the layers of misunderstanding in efforts to build those bridges between the community itself and society.

Participation is simple: Share your story.  Using social media as your megaphone (like so many of us already do), show what your diabetes life is really like through blog posts, photos, tweets, status updates, and videos, and tag your stories with the #WalkWithD hashtag.  (Were you thinking about starting a Twitter account?  Today would be good – you’ll have three days to practice before #dsma!)

Gone are the days of stock photography representing diabetes (besides, it always pissed me off to see the stock photography lady who had diabetes one week and who also came back as a search for “office meeting frustration” – show me REAL PEOPLE with ACTUAL DIABETES, not the same reused stock photography model) – social media gives us the opportunity to replace the stock photos with real faces, real stories, and real life with diabetes.

To see the patchwork quilt of stories assemble real-time, check out the Tagboard in place at WalkWithD.com.

Together, we can create a collage that shows people both in and outside of the diabetes community the reality of life with diabetes.  This is what we do when we write blogs about our experiences, when we create videos, when we Tweet, and when we take on documenting a #dayofdiabetes.  This campaign is help us better understand one another, and to reach outside of the diabetes bubble and drop some diabetes slice-of-life on society as a whole.

Every voice matters.  I hope this campaign helps bring more voices to the community because I love learning from the DOC.  Are you caring for a child with diabetes?  Living with type 2 diabetes?  Newly diagnosed with diabetes?  Living with type 1 diabetes?  Gestational diabetes?  In a relationship with someone touched by diabetes?  There are so many different walks with D.  Connect with others touched by diabetes to understand their journey and to let them know that they don’t walk alone.

This advocacy campaign was developed by the Partnering for Diabetes Change group and runs from today through the end of Diabetes Month (9-15 through 11/30).  The goal is simply to raise awareness for, and highlight the dignity of, life with diabetes.  Walk with me, walk with D.

So Many Things!

A Friday Six on a Wednesday!  Because why the hell not.

The FitBit obsession.

Renza talks about the messaging of diabetes, and what we can do to get it right.

Here is some damn sneaky research.

Seb is still running. And I’m still supporting the hell out of him, because he’s incredibly dedicated. You can still support him, too.

I am having the hardest time not filling our home with everything Murray, by way of Derek Eads.

“It’s a day to remember those who were lost. For me it’s a reminder that I’m lucky to be alive.”  Amazing post from Carly about a medical emergency on 9/11.

Are you in the Los Angeles area?  Diabetes Sisters is coming to LA on October 24th, and I’ll be part of the event, alongside some of my favorite DOC people (Hi Cherise, Manny, and George!).  Hope to see you there!

That same weekend, up in Anaheim, CA, the Children With Diabetes team will be holding a Focus on Technology conference.  There will be a whole session on setting up your CGM in the Cloud rig – don’t miss it!

Coming Together as a Community – a great piece from diaTribe’s editor-in-chief Kelly Close.

There is no such thing as a “free food.”  Sort of.  New column at Animas.

“today, i felt parts of the monster within myself.  today, i felt parts of the hero within myself.”  Excellent post from Heather Gabel about the activated patient.

THE SEA OF TREES found its way into People Magazine last week.

And these – THESE VIDEOS ARE AMAZING.  Melissa, you are the Weird Al of the DOC.  :)

An In-Depth Look at the Diabetes UnConference.

Peer to peer support has been shown to be highly beneficial to those living with diabetes. The report, “Peer Support in Health – Evidence to Action,” summarizing findings from the first National Peer Support Collaborative Learning Network shared that: “Among 20 studies of diabetes management, 19 showed statistically significant evidence of benefits of peer support.”  In keeping with that theme, The Diabetes UnConference, the first peer-to-peer support conference for all adults with diabetes, is on tap for March 2015.

Founded by Christel Marchand Aprigliano, The Diabetes UnConference is facilitated by volunteers well known to the diabetes community: Bennet Dunlap, Heather Gabel, Manny Hernandez, Scott K. Johnson, George Simmons, Dr. Nicole Berelos, PhD, MPH, CDE and Kerri Sparling [me ... can you tell this part was a bit of a cut-and-paste from the "about" page on the UnConference website?  Yes ma'am.]  These diabetes community leaders are familiar with the topics that will be covered; each live with diabetes.

The Diabetes UnConference will be held at the Flamingo Las Vegas from March 12 – 15, 2015, and today, I’m talking with founder Christel Aprigliano about the when, how, and most importantly the why of this ground-breaking event.

Kerri:  I know you.  And think you’re awesome.  For those who haven’t met you yet, who are you, and what’s your connection to diabetes?

Christel:  I was diagnosed with type 1 diabetes at the age of Six Until Me times two. (That would be twelve years old, if you have problems with math like I do.)  I didn’t know many other Type 1s growing up and spent a lot of my teens and early 20s ignoring the physical and psychological issues of having this disease. I had a great medical team that stuck with me and helped me to learn how to live with it, not fight against it.

In August of 2005, I complained to my then boyfriend (now husband) that there weren’t any weekly podcasts about diabetes. Next thing I knew, we had started diabeticfeed, talking about diabetes research news and interviewing people doing amazing things with diabetes. (This interview was in January, 2006 with a woman named Kerri Morrone. We talked about Jettas and diabetes.)

I joke about being a part of the DOC before it was the DOC. While we stopped producing diabeticfeed, I’m doing other things: writing at ThePerfectD, working with other advocates on cool projects like StripSafely and CGMSafely and founding The Diabetes UnConference. While I’m not thrilled to have diabetes, some of my most favorite people in the universe came from connecting with others because of it.

Kerri:  There are a lot of conferences that center around diabetes.  Why the UnConference? 

Christel:  I’ve been to a lot of diabetes conferences and some of the best experiences I’ve had are not in the research sessions or keynote presentations; it’s hallway moments when I’m connecting with another Type 1 or sitting around a lunch table sharing stories and tips. I would leave these conferences wishing that I had more time to talk about the emotional aspects of having this disease and how to live well with it.

During a brainstorming session at the Medtronic Advocacy Summit in January, a question was asked: “What could you do this year in the diabetes community to make a difference?” And the next thing I know, I’m saying that I wanted to have a conference that would bring adults with diabetes together to talk about living with diabetes and learning from each other  – an “unconference.”  (Unconference is a concept made popular by the tech community, where the agenda is decided by the participants during the first hour of the conference. No keynotes, no research sessions, just talking and sharing in a safe environment where there’s no judgement.)

What also makes The Diabetes UnConference unique is that it will bring type 1 and type 2 adults together in one room for a multi-day conference. No other conference does that. We all have non-functioning pancreases (only varying by degree), we have many of the same long-term complications, we all have to deal with depression and burnout and stigma, and we all want to live well with diabetes. We can learn from each other in a safe environment.

Kerri:  What was the scariest thing about taking the leap to put this conference together?  What was the most empowering?

Christel:  The scariest thing has been the idea that I’d be sitting in a huge meeting room in Las Vegas by myself, eating several thousands of dollars worth of food by myself to fulfill the contract that I signed with The Flamingo. I don’t have enough insulin to bolus for it all! (Thankfully, everyone I’ve spoken with about The Diabetes UnConference has been excited about it.)

Really it’s the idea that there people out there who need and want to talk with other people with diabetes and don’t know that this exists. It’s always that way with something new and innovative, isn’t it? We also have scholarships available for those who do want to come but may not have the financial resources to attend.

The most empowering? Knowing that it’s the community that is making this happen. I may have had the initial idea, but without amazing facilitators and participants who want to create this unforgettable experience is mind-blowing. This is about a community helping each other, learning from each other, and connecting with each other. This community empowers me to believe that we can do so much when we listen to each other.

Kerri:  Why should people attend the conference?

Christel:  We spent a few hours each year talking with our healthcare team, mostly about lab results and medication adjustments or treatment recommendations. The rest of the year, we’re on our own. We don’t have time to talk with them about our feelings surrounding living day-to-day with diabetes.

Our community is amazing. We can talk about the emotional aspects of living with diabetes online, but nothing can take the place of looking into each other’s eyes when you talk about fears and burnout. It’s rare to find someone willing to talk about diabetes sexual dysfunction in public, but by creating a safe environment where others might have the same issue and may have a solution? You may not feel comfortable talking about job discrimination online, but in person? I want people to have a safe place where they can express their feelings and get support and hopefully options…

Plus, when the diabetes community gets together, we build these incredible friendships and have an insane amount of fun. Laughter is always in ample supply.

I don’t want people to feel alone with their diabetes. I felt alone for years. That’s why people should attend.

Kerri:  How can people register? 

Christel:  Go to www.DiabetesUnConference.com to register and learn more about the conference. (It’s March 13 – 15, 2015 and being held at The Flamingo Las Vegas. We got great rates for the hotel, too!)

Our scholarship applications are open until September 30, 2014.

We’ve got some wonderful surprises up our sleeve, thanks to our sponsors. Insulet, Dexcom, Roche, and B-D have committed to helping make this conference happen, and I’m so grateful. (That being said, any company who is interested in helping can contact us and be a part of this.)

Kerri:  Thanks, Christel.  And for those reading, the scholarship applications are open until September 30th, so if you’d like to apply, please click over and send in your applicationHope to see you all in March in Las Vegas!!

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