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Posts tagged ‘community’

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.

*   *   *

Global Connections in the DOC.

In October, I was in Barcelona for the 2nd European Blogger Summit put on by Animas and had the opportunity to brainstorm with several diabetes bloggers from across the pond.  (And some from waaaay across the other pond there on the far left … I’m talking to you, Australia.)

This video is a compilation of some of the things we took away from the summit, and what our hopes are for the coming year.

Check out these blogs from the folks in the video:

Diabetogenic

Insulin Independent

Mein Diabetes Blog

Project D’s Blog

The Grumpy Pumper

The Understudy Pancreas

Tutti I Diabetici Uniti In Rete

 

Of Cocktails and Community.

“So what you should do is see what people are searching for and then carefully tailor your posts to draw in those searches.  Pick the search engine terms that there isn’t a high competition for, giving you an advantage in Google’s search algorithm.”

The example he used was pretty simple:  “10 Best Cocktails for People with Diabetes”

In a discussion during the European Bloggers Summit in Barcelona (running alongside EASD), a search engine optimization expert gave a presentation about seeding blog posts with keywords in order to cast a greater net for readership.  The SEO strategist was helpful, and had wonderful advice for people who were churning out content to get it read, but my  body had a tangible reaction to this kind of advice.  I felt myself prickling with frustration because is this really what people are writing for?  Page views?

No freaking way.  Not in this community.

So the top ten best cocktails for people with diabetes?  Fucking sure.  Let’s do this, social media-style:

  1. The #DSMA:  Take 140 characters, a hashtag, and equal parts honesty and humor and mix them thoroughly in Twitter.  Tastes best on Wednesday nights at 9 pm EST.
  2. The Blogosphere:  Start with a URL or a Feedreader and slap it into the search bar on your mobile device, tablet, or computer, or Google “diabetes blogs” for a list of ingredients.  Mix reading these blogs throughout your day for a boost in diabetes empowerment and community.
  3. The Flaming YouTube:  Search through YouTube for diabetes, or “diabetes math,” or “breaking up with diabetes,” or “changing the song on my Animas Ping” and you’ll find a slew of video combinations to add to your playlist.  (Title the playlist “Cocktails for Diabetics” and you’ll probably get a lot of search returns, but you’ll also find people who want to be found.)
  4. The Instagrammed:  Take your phone, photograph any ol’ diabetes bit or piece in your house, and mix with Instagram to create a frothy, fun mix of Dexcom graphs, race bibs, brave new infusion set sites, Halloween-candy-casually-pretending-to-be-hypo-treatment, and friends who understand.
  5. Facebook Your Face:  Take your Facebook account and stir gently with groups, hashtags, and posts about diabetes.  It may take a while for this mixture to fully set, but once it does, you’ll have a shot of community you can take in one sitting, or something you can sip on and scroll through for hours.
  6. The Friends for Life Take one part people with diabetes, one part caregivers, one part educators, one part inspirational athletes, one part Disney World, one part green bracelets, and a billion parts love and throw into a salad shooter and spray that stuff everywhere because in-person diabetes meet-ups and conferences will break your heart and mend it within the course of a week.
  7. The Group Text:  No specific ingredients, but a drink best shared with many.  And at 3 am.
  8. The Call Me:  Best served when low, because a phone call to another PWD who understands is the best way to keep from over-treating.
  9. The Honest-Tea:  Equal parts empathy and honesty, this cocktail is a must for people with diabetes who are looking for confirmation that they aren’t alone.  It’s not about enabling, but empowering.  (Goes really well with a side of Communi-Tea.)
  10. The Hug:  Social media is great, but nothing is better than a hug between two people whose much-loved pancreases have taken an extended leave of absence.  There is no set ‘best time’ for this cocktail – serve immediately and enjoy.

The one in the middle looks like pee, to me.

People in the diabetes community don’t communicate with one another for page views or Google search prowess.  Of course, not everyone’s intentions are the same across the board, and there are people who immerse themselves in a community looking for things that aren’t as altruistic, but the majority of interaction in the DOC, from what I can see, is between people who need each other.  That’s why so many of us started doing this, and it’s why so many of us continue.

Because when Google redoes its algorithm and there’s a new system for search engine optimization, when there’s an upheaval in what’s considered the “it” platform for social media, the song remains the same for the DOC.  Diabetes, for many, isn’t just in your body but also resides full-time in your head, and managing emotions and support is as essential as insulin (and with a significantly lower copay).  It’s not about where the discussions are taking place; it’s about the discussions that are taking place.  So “drink” up!

Weird Together.

“I travel a bit and go to conferences and events where there are people who have diabetes, too.  It can be kind of isolating, diabetes, so knowing other people who have it makes it easier to manage on all levels.  Does that make sense?”

“Yeah.  It’s like, ‘Hey, we’re weird together.’  And when you’re weird together, you get closer.”

That Guy George From the Plane (TGGFtP) and I spent the flight from San Francisco to Chicago sitting next to one another, talking first about how hung over he was (he was in San Francisco for a bachelor party and had a collection of air sickness bags in his seat pocket, jokingly at the ready) and then touching into trickier topics, like religion, politics, healthcare, and other topics that Miss Manners suggests keeping to yourself.

But honestly, after all the time I’ve spent in planes this past week (BOS -> LHR -> BCN -> SFO -> MDW -> PVD = WTF), I was happy to talk to someone, instead of picking through emails.

I laughed, harder than I’d meant to.  “Yes, that’s it.  That’s it, exactly, and a very eloquent description, at that.”

It’s true, though.  Even though I don’t have friendly feelings towards every person with diabetes I’ve ever encountered due to personalities, preferences, and proximity, there still is a strange draw to them.  It’s intrinsic.  At the MedX conference this past weekend, I was in a conference room with three PWD I knew (Sara, Chris, and myself), but when I heard a Medtronic pump go off somewhere a few rows behind me, I was intrigued and started doing the math.

“Sara and I are on Animas, so we don’t make the boop beep boop sound, and Chris is on MDI, so that’s not him going off.  Who is it?”

The boop beep boop’er didn’t make their presence known, and I didn’t pry, but if that person came up to me and needed to bum a fresh lancet or a test strip or a fistful of glucose tabs, I would have emptied my pockets for them, no questions asked.  There’s a level of understanding in play that’s automatic, and feels downright autonomic.

George was right:  I like having people to be weird together with.  And I like the fact that being weird together makes us closer.

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