Skip to content

Posts tagged ‘community’

Unraveling the UnConference.

Thanks to the vision, dedication, and determination of Christel Aprigliano, the first Diabetes UnConference came together in Las Vegas last weekend.

“Wait, what?  I didn’t see anything on Twitter or Facebook!”

And that’s because there was a social media blackout on the whole conference during the actual course of it.  No live-Tweeting, no live-blogging, no live-streaming.

As my daughter used to say: “nuffin.”

Which is something I admittedly didn’t agree with, at first.

I always view conferences, both professional ones like the American Diabetes Association Scientific Sessions and the more community-based ones like TCOYD and JDRF‘s TypeOneNation, as an enormous privilege to attend.  Travel, lodging, and time for conferences can be a huge barrier to attendance, and as someone who has had channels of support that make it possible for me to attend a lot of meetings throughout the year, I feel like it’s part of my “job” to report back on how things went.  And not in a wicked journalistic sense (because my tendency to curse remains what it is and sometimes I don’t take fastidious notes but instead drink copious amounts of coffee), but in a man-on-the-scene sort of sense, trying to help fill in some of the blanks for people who aren’t able to make that particular meeting.  It’s not right that everyone can’t be everywhere they’d like to be, and the diabetes community is good about paying things forward.

[And yes, this is where my disclosure comes in.  In an effort to open up more of Christel's conference budget for crucial things like scholarships, etc., Animas was asked to sponsor my attendance as a facilitator, and they thankfully jumped on board.  I'm grateful for my personal and professional relationship with Animas and the support they have shown to me and to the diabetes community as a whole over the past five years.  For more on my relationship with the company, you can read my disclosures.]

But having a social media blackout was a good thing for the UnConference, even though it kept the conference closed.  Why was that good?  Because there was a lot of vulnerability at this conference, and it wasn’t on display for people to comment on, or document, or send out to a slew of social media followers.  Some folks in attendance were meeting fellow people with diabetes for the first time ever, and others were reconnecting and enjoying established relationships.  People talked about how diabetes affected their lives, and the things that made them feel a slate of emotions – guilty, triumphant, and all the ones in between.  To let the discussion flow without feeling the need to document it was a nice change of pace, and personally kept me in the moment.

Which was helpful, because attendees didn’t share all their “sames.”  It wasn’t an exercise in group-think, where people all said they reacted similarly to diabetes scenarios.

For example, when we were talking about burnout, many people shared their personal experiences with diabetes-related burnout, and others said that they haven’t ever experienced burnout.  I thought that was a powerful moment, because while there might be majority opinions on certain topics, the whole point of the diabetes community is that we are strong in what unites us as well as what makes us different.  One size doesn’t fit all, and neither does one emotional response.  I loved these moments because they woke me up and reminded me of the diversity of our experiences.

While I wish there could have been more people in the actual room, I know that access to conferences like this will come in time.  To that same end, half of the people in attendance were people I hadn’t met before.  It wasn’t the “same crew,” which I thought was powerful and helped shake up some of the “same scene, same people” vibe that has a tendency to dominate at a lot of diabetes conferences.  But what really resonated for me is that people felt comfortable and confident during these discussions, and I think the social media “blackout” contributed to that comfort.  Scrutiny was at a minimum and people could concentrate on being present.

Which is why, at the end of the conference when we were asked to write one word on a 3×5 to describe how we felt about the sessions, the word I wrote was “heard.”

Blog posts about this UnConference might be scarce, but to me that scarcity makes sense.  It was about sharing in the moment, not recapping after the fact.  Maybe, for once, what happens in Vegas stays there in specifics and instead makes it back into the community in the form of increased discussion, support, and connection.


D-Blog Week: What Brings Me Down … and Then Back Up.

Diabetes has made my body broken in ways I don’t readily admit, but I am sometimes forced to acknowledged.  People talk about my daughter’s chances of developing the disease and they always give me what they think is a comforting comment – “At least it would be the devil you know,” – but that doesn’t ease my boxed-away fears and I usually end up saying, “Yeah,” through gritted teeth because I don’t know how to explain that this disease isn’t the devil I know.  It’s the devil that I think I know, but it still tricks me and the road takes unexpected turns.

Last night, before bed, I kissed my husband goodnight and tested my blood sugar.  The second-to-last thought I had before bed was how thankful I was to hug my daughter and my mother on Mother’s Day.  The last thought I had filled a fleeting blink of a moment – “I hope I wake up in the morning.”

Diabetes isn’t just in my pancreas.  Or on my lab work printout that gets mailed alongside my electric bill and the leaflet about lawn service.

Diabetes gets right into my head, into my mind, and frays the edges of my emotional health.  I feel happy and healthy the majority of the time, but diabetes does play a huge role in the moments that make me feel vulnerable.

It’s not a “set it and forget it” disease.  It touches every moment of every day.  It impacts decisions I made decades ago, and I worry about its influence on my health decades from now.  Even something as simple as lunch isn’t “just lunch.”  The food on my plate looks more like a paint-by-number set than actual food.  It’s not a hamburger and fries – it’s 90 grams of carbs that I need to calculate insulin for.

To be honest, this Diabetes Blog Week topic makes me uncomfortable.  Not because it’s bad, but because it’s hard.  It makes rational thoughts tumble down the rabbit hole until I’m in so deep that I’m grasping at roots to pull myself out.  It’s hard to admit that, even though I don’t feel sick, I’m not entirely “fine.“  It’s hard to talk about the parts of diabetes that make me feel sad or depressed because that’s truly not how I feel the majority of the time.

But I have felt long jags of it.  Long periods of emotional confusion where, whether I’d care to admit it or not, the root cause was diabetes.  Even though I don’t want to be defined by this disease, it does explain some of my sadness.

As I wrote last September:

“I wish I had a more gracious outlook on my experiences with diabetes, but I don’t.  I wish I felt that it was some kind of blessing, but to me, it isn’t.  It’s a thorn in my side that digs in deeper with every passing anniversary, but fuck you, diabetes.  I’m tired at times, but I’m not stopping.  I’m afraid, but I’m still going.  Diabetes has brought me to some of the edges of life, daring me to look into the abyss and wonder just how long I’d know I was falling before I hit the ground, but there’s power in that.  I’m living with diabetes, with all the accompanying ugliness and arrogance, power and determination, all the perspective and perseverance and bitterness, all the fear and fearlessness that comes with any life, but is micro-scoped and magnified by a disease that never, ever takes a breath and doesn’t leave my world until I do.” 

Perspective is a funny thing, though.  Sometimes people with diabetes don’t give themselves enough credit for achieving the baseline that others may take for granted. Knowing I live with a disease that has aggressive moments and many bodies in its wake, the bad days can be really bad.  But the good days are magnified, and magnificent.  I don’t know what it’s like to be pregnant and not have diabetes, but I do know that the moment I gave birth to my most treasured Bird, the joy was indescribable because I felt like I had defied odds en route to motherhood.  Small victories fill my soul because I know they are the result of my hard work.

This is damn hard work, with the reward for a “job well done” being the opportunity to do it all again tomorrow.  On some days, this relentless cycle can bring me down. But it doesn’t take much to fill me back up.

And I am grateful for a body that, despite not making insulin, still knows how to make joy.


Nine Years of Blogging.

Today is my blog’s ninth birthday.  Tomorrow starts year ten and I still stand by the words I wrote in my first post, back in 2005:

“The purpose of this is to make contact with other diabetics. It’s one of those diseases (or maybe they’re all this way, I’m not sure) where even if you have the mechanics of it completely mastered, the psychological battle is just as daunting. Every time I test my blood sugar, the result stirs me up emotionally. If I’m high, I feel guilty. Or surprised. Or angry. If I’m low, I feel anxious. And slightly panicky. Or confused. A normal reading level might make me feel cocky. Or successful. But they all make me feel something. And it’s not just physiological. There is so much involved in the daily maintenance of diabetes that a support network isn’t just nice, it’s necessary.”

Thanks to everyone for continuing to read, to share, and to expand the definition of “support” with every word, meet-up, and friendship forged.  The DOC is as important to my emotional health as insulin is to my physical health, and I’m thankful for the opportunity to be a part of it.

Or, if this were an SAT analogy, I’d write that as:

Insulin : Physical health : : DOC : _______

a.  Concrete
b.  Frogger
c.  Emotional health
d.  Harlot

When in doubt, pick (DO)C.

If I Knew Then: Diabetes Blogging.

I wish I had known, at the outset, what a “blog” was.  When Chris suggested I start one back in 2005, the face I made was as though he had shoved a lemon into my mouth.  “A blaaaaahgg?”

I wish I had known that things like SEO would matter – not on the “I need more page views” sort of nonsense, but in terms of being found by the people I was hoping to connect with.  I started blogging in search of others who understood what diabetes in real life was like, and in starting that journey, I picked a blog title that took poetic license into account more so than SEO.  (I guess I should have included ‘diabetes’ in the title, but where’s the fun in that?)

I wish I had known how privacy concerns would change over the course of a decade. When I first started writing about diabetes, I wanted other people to find me, and I was happy to have my real name attached to my writing.  (I also didn’t know any better.)  Openly disclosing my diabetes was an asset in my pursuit of diabetes-related employment (leading directly to my job at dLife) and I was fine with being Googled.  But over time, and with the realization of how pervasive the Internet is, I wanted a less-is-more approach for certain topics.  Not everything needs to be shared, in particular moments where my family is concerned.  We have made certain decisions, as a family, but it doesn’t mean they are the right choice for everyone.  There is no “right choice,” – just varying perspectives and levels of comfort.

I wish I had known how much I needed to connect with peers who have diabetes.  I don’t know what it’s like for every person diagnosed with type 1 as a kid, but for me, there was this long period between diabetes camp and finding the DOC where I felt isolated and alone with diabetes.  I didn’t realize the missing link between “pursuing” and “achieving” my health-related goals was peer-to-peer support.  Having access to a community doesn’t make me like diabetes, but it does make diabetes feel less like something I’m inclined to hate.

I wish I had known there would be trolls.  And that they don’t matter.

I wish I had known how my writing would affect the people closest to me.  When I write about a low blood sugar that scared the hell out of me, I forget that my mother and father also read about that same low blood sugar, and it still scares the hell out of them.  My diabetes, though existing in my physical body, reaches out into my family and might scare them at times, too.

(To that same end, I wish I had known my mother didn’t know that I could pre-write posts and schedule them to go live at any given time.  For a while, my mom thought a new blog post in the morning meant I was awake and fine.  I hated taking that security away from her.)

I wish I had known there would be growing pains as the community expanded and grew in numbers, scope, and passion.  When the DOC was small, it was easy to know all the folks involved and for people to support one another.  Now, there are hundreds and hundreds of amazing voices and perspectives, and keeping up is damn near impossible.  Even the best feed reader and the strongest coffee can’t get me through everyone’s new updates, so I read as many as I can instead of reading as many as there are.  Sometimes I don’t agree with everything I read, but isn’t that the point?  For the community to expand my mind and my perspectives?  For the DOC to be the red pill?

I wish I had known that the community would be bigger than one state, or one country, or even one continent.  I wish I had known that I would find kindred spirits in London and Melbourne and Burlington.  I wish I had known that these people were there the whole time, living with diabetes just like I was, and that I wasn’t nearly as alone as I felt at times.

I wish I had known there would be a lot of people asking “How do I get involved?” Because then I’d be prepared to tell them that involvement requires participation.  You want to get involved with the diabetes community, online or off?  You need to put yourself out there, even just a little bit, and make yourself available.  Volunteer at local JDRF or ADA events.  If support groups don’t exist, start one.  If you want to become more connected online, go to where many people are connecting (try #dsma tonight, even!).  Start your own website.  There are many avenues for diabetes advocacy, and the need for your voice is critical.

But what I did know is that every voice matters.  And every voice has always mattered.  This community is huge and continues to grow because it needs to, and because there isn’t someone who tells the story of all of us.  We tell our own stories, and the power is found in the collective itself.  One diabetes blog or website or newsletter doesn’t define this community (there is no “blog of Sauron”… wait a second …), so share your story – please!  Raise your voice.  And maybe the difference we make can be felt in more that just our own lives.


What’s Your Itch?

My “diabetes advocacy itch” has always been emotional health.  I’m not a doctor and I don’t know everything about type 1 diabetes, but I do know that I pay more attention to my diabetes when my head is in a healthy space, and being tuned in to diabetes improves outcomes, for me.  Feeling stressed, overwhelmed, upset … any kind of intense emotion like that seeds itself in my management attempts and upsets the apple cart.  (Or, to be more accurate, the islet cart, which is already a precarious one.)

I can have the most up-to-date, tech-savvy glucose meter on my bedside table, but I still need to motivate myself to load the test strip, apply the blood drop, and make decisions on the result.  I can have access to the best medical team in the country, but I still need to follow through on the appointments that are scheduled.  All the diabetes management tools in the world are rendered useless if I don’t use them.

Which is why the psychosocial side of diabetes interests me so much, because I feel that mindset can be as important as access.

(I realize that it is a privilege to have access in the first place – see how it comes back to mindset?  During the Spare a Rose campaign, I was repeatedly reminded to appreciate the insulin sitting in my butter compartment, which made me want to move the Life for a Child mission forward even more.  :: scratch, scratch ::)

Since the start of my blog back in 2005, I’ve seen people in the DOC space tackle a host of issues, because it was their “itch.”  Some people make their focus the FDA, or research, or fundraising for different organizations.  Some people want to move the needle on access to care, or exercise, or peer-to-peer support. Some people want to connect with PWD in their town, or have a network to discuss emotional issues with.  Others want to tackle public perception, or offline outreach, or influencing policy.  Just like the variables of diabetes, the advocacy and connection possibilities are endless.

Lots of different “itches.”

Every single aim is important.  Every voice is important.  Every person touched by diabetes is important.

So I want to know what your “itch” is.  What fuels you?  What diabetes issues are important to you?  We’re a huge community with the ability to do a lot of good, and it starts with knowing what you want to see “scratched.”  Maybe by sharing, we can find kindred spirits and get scratching.

Make a Difference For One.

An ode to the community I respect so much, and one that doesn’t simply exist “online.”  Diabetes advocacy takes shape in the smallest actions – you don’t have to be a “blogger” in order to make a difference. 

Make a Difference for One.

We’re united by beta cells on a long break.
We’re united by know just how much it takes
To pinch hit for pancs that gave up on producing
The hormone we use for blood sugar reducing.

It’s bigger than blogging. It’s bigger than Twitter.
It’s bigger than sharing photos of no-hitters.
It’s more than just Facebook; it’s more than the Tumblr.
It’s more than the lab work or A1C number.

It’s a group of compatriots, joined at the point
Where their betas up and vacated the joint.
But the group isn’t limited to those with the D.
It’s for those who are touched even casually.

If you blog – you’re in. If you Tweet, you’re in, too.
If you wish you did these but no time, it’s still cool.
Social media isn’t what makes you a part;
It’s those hiccuping betas, and an increase of heart.

Every way that you raise up your voice is what counts
Awareness is spread in big and small amounts.
No reach is too small and no efforts too rife.
Make a difference for one and you’ve just changed a life.

Power of Patient Communities.

At the end of November, I had the opportunity to contribute an article to Pharmaphorum, which is a UK-based publication with the mission to “connect healthcare thought leaders to support the pharma industry in delivering innovation.”  Thanks to the thoughtful responses from Bob Pederson, Shannon Marengo, Laura Gibson, and Melanie Bunda, I was able to highlight some of the benefits of the DOC connections.  Here’s that article in its entirety (with links and photo added by me), originally published on Pharmaphorum:

*   *   *

Twenty-seven years ago, when I was diagnosed with type 1 diabetes at the age of seven, I was immediately handed a syringe and a vial of insulin and instructed on the how and why of injecting myself with the life-saving hormone. I tested the glucose level in my urine using an at-home urinalysis kit resembling an Easter egg coloring kit. It wasn’t until about a month later that my family was given an at-home glucose monitoring machine, helping us match insulin needs to blood sugar numbers. Semi-dark ages of diabetes.

Support and community were also somewhat remedial, and seemingly limited to where my parents’ car could drive us. For a few summers after my diagnosis, I attended a special summer camp specifically fashioned for young girls with type 1 diabetes. The once-lonely ritual of taking my morning insulin became something I did, without shame or bias, alongside my peers. Knowing I wasn’t alone made diabetes feel less isolating and scary, and instead something I felt emotionally equipped to handle.

But I eventually aged out of diabetes camp and went through my high school and college experiences without access to diabetes-centric peer support. Involved and supportive friends and family members were amazing, but there was still a gap in my care team, one that could only be filled by like-minded and like-pancreased peers. My care, both physically and emotionally, was less-than-optimal for several years.

Now, twenty-seven years after my diabetes diagnosis, I am still treating my diabetes with the same sorts of technology: insulin, glucose meter, and urinalysis. What has changed, by leaps and bounds, is the psychosocial support available to people living with diabetes, and for those caring for a loved one with diabetes. The Internet has changed that landscape of support, allowing people with diabetes to connect from two doors down or seven time zones away, thanks to social media and a willingness to disclose their diabetes to the web.

What are patients getting out of online connections? I hear this question being raised by researchers and healthcare professionals, and I am frustrated by the lack of data that proves the positive impact of patients connecting with other patients online. Few studies have been done around the psychosocial impact of online support for people with diabetes, but the ones that have been conducted show improved health outcomes.

And I shake my head in disbelief, because aren’t these healthcare professionals hearing what I’m hearing from my peers? I started blogging at Six Until Me almost nine years ago about day-to-day life with type 1 diabetes, writing in pursuit of finding others who understood and who were living normal lives, even after their diagnosis. I found so many people just like me, sharing their struggles and successes without shame or judgment. And in the last nine years, I’ve collected countless, truly countless, emails from people recounting their improved care, improved outlook, and improved lives as a result of connecting with the diabetes online community [DOC].

“[Once I found the diabetes online community,] I was empowered to take control of my diabetes. I had hope. My A1C dropped within a few endocrinologist appointments. It dropped because the number of times I tested my blood sugar per day rose from less than once to more than six. I started on a continuous glucose monitor. I tweaked my basal rates. I learned to combo bolus the hell out of pizza. I learned a whole new language with which to bring my diabetes up with my friends and coworkers and boyfriend. I learned that I had a future. The DOC taught me these strategies and more for seamlessly incorporating diabetes in with the rest of my life and the impact was huge,” wrote Melanie Bunda, diagnosed with type 1 diabetes at the age of six. “Today my A1C is under 7%. I’m in a relationship with someone who partners in my diabetes care and we are working toward a future that will hopefully include children. This is the power of the diabetes online community.”

“Before finding the DOC I was basically living status quo – and frankly didn’t know nearly what I should’ve known after all those years. But when I was diagnosed [with type 1 diabetes] at 17, I was too old for my mom to manage it for me and too young to really manage it for myself. I’ve been armed with so much information these last almost two years and am in such better control. And it helps having a fully loaded support group just a click away,” said Shannon Merango.

Bob Pederson was diagnosed with type 2 diabetes five years ago, and has been involved with the DOC for the last few years. “Initially, I was most inspired by our amateur athletes like Jeff Mather [amateur marathoner and cyclist]. I figured that while I could never duplicate their achievements, I could maybe duplicate their dedication. I can’t tell you how much help the little bits of encouragement, support, and applause I get on Facebook mean to me. Starting a few months ago, I started having the most sustained success at healthier living. I have ever had. I am choosing not to publicize numbers, but I have thus far lost [significant amount of weight]. The DOC has been critical in that success.”

Some of the stories involve data, like weight loss and A1C improvement, but the emotional support can be hard to quantify. How do you measure the concept of “feeling better?” Or confidence?

”I think the thing that the DOC has helped with most is confidence going into a potential pregnancy with diabetes,” said Laura Gibson, diagnosed with type 1 diabetes at the age of 18, now 32 years old. “A couple of years ago, my then fiancé and I always thought, ‘We’ll adopt,’ when discussing having kids. This always made me a little sad as I want to experience pregnancy, childbirth, and breastfeeding. Granted, I think adoption is wonderful and will always be an option for us, but selfishly, I want to [experience pregnancy]. Finding blogs [that discussed pregnancy and pre-existing diabetes] really made me think, ‘I think I can do this!’ It’s inspired me to get my diabetes under better control and really excites me to – hopefully – experience pregnancy in the next year or so.”

Many of the stories I hear today aren’t part of a study, nor are they being presented at medical meetings or written up in peer-reviewed journals. But online patient communities of all kinds are supporting patients and empowering them to take control of their health. These anecdotes will become part of the eventual proof that peer-to-peer support can contribute to an improved emotional state and improved health outcomes, giving people with diabetes hope that there is a healthy, fulfilling life to be found after diagnosis.

*   *   *


Get every new post delivered to your Inbox

Join other followers