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Posts from the ‘Diabetes Advocacy’ Category

Diabetes Blog Week: Language and Diabetes.

Language and Diabetes:  There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I’m willing to bet we’ve all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don’t care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let’s explore the power of words, but please remember to keep things respectful.

(And for more on the topics of Diabetes Blog Week 2016, click here.)

Language matters.  The words we use matter.

Some words make me all fired up, like “consumer.”  I am a consumer when it comes to cars, or coats, or snow blowers.  When it comes to diabetes, I’m not a consumer.  I would never choose to consume these goods; they are chosen out of the desire to stay alive.  I don’t like “suffering from diabetes” because it makes me feel weak and compromised, which stands in contrast to where I prefer to anchor my emotions about diabetes.  And I totally hate the concept of “good” and “bad” blood sugars.  That whole ideology can fuck off in favor of “in range” and “out of range.”

I appreciate the word “complications” because its connotation is perfect for how I feel about diabetes-related complications; that shit is complicated.  I like the word “empowered” because it reminds me that I have a say in how this whole life maps out, diabetes or not.  I like any words and phrases that tie the physical aspects of diabetes to the emotional ones.  I latch on actively to “hope” versus fear.  And I like being called “Kerri” instead of “diabetic,” but hey, that’s just me.

(And I really like certain curse words, but I am trying to use those less, but it’s difficult.  I don’t make insulin, I do make use of curse words.  It’s a terrible habit, but one I am not changing.)

But it’s not about the words we shouldn’t use, or the ones that seem potentially loaded.  This morning, after hearing about the death of a fellow advocate (outside of the diabetes space), I’m spinning with thoughts of the words I wish I used more, the things I wish I said.  The things I should say.

Like “thanks for sharing this.”  I think this every time I read a blog post, or a Tweet, or a Facebook update from someone and it makes me stop and think.  The DOC is filled with voices that challenge what I thought I knew, and who teach me how to re-examine my chronic illness with grace and determination or perspective or humility … or all of it.  I like the way they think.  I like what they say.

And “How are you feeling today?”  I interact with a lot of people touched by illness – patients, consumers, caregivers … whatever word words for you in this way – and their stories touch me.  A lot of the time, I absorb what they’re saying and store it away in my head, but I want to reach out more, ask “how are you feeling today?”  I want the people in our community, and outside of it, to know how much I appreciate what it takes to share their stories, even when they are worn out by doing it, by living it.  A little ask goes a long way.

Or “You aren’t alone; how can I help?”  Because sometimes people share to get things off their chest (“I hate low blood sugars!”), but other times they reach out in hopes of someone reaching back (“I feel so alone with diabetes.”)  Words matter, and hearing, “You aren’t alone; how can I help?” might make a difference.

And “I’m sorry.”  Because I am.

But mostly “thank you” and sometimes, “I love you.”  Over the last few years, there have been people who have come and gone from my life that left lasting impressions, and I bet I didn’t tell them “thank you” and “I love you” nearly as much as I should have.  I know I thought it – thought it a lot after they were gone – but I should have said it then.  When they were here.  When they could hear me and understand the influence they’ve had on my life, the positive mark they’ve left on my existence, and the ways they’ve rocked my world for the better.

Words matter.  Stories matter.  People matter.  So thank you.  And even though you’re reading these words on a glowing screen and we’re communicating mostly through a digital medium, you are part of a community that has forever changed me.

 

Diabetes Blog Week: Message Monday.

It’s Diabetes Blog Week, a week in the year where diabetes bloggers can rally together and share their stories, following suggested (but not mandated!) themes and focusing on connecting with one another as a community.  And who better to closely knit our community together than Karen (who is known in my household as “The Knitter“)?  Karen kindly brings us closer on Diabetes Blog Week by inspiring others to raise their voices.  So let’s do that.

Message Monday:  Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? (Thank you, Heather Gabel, for this topic suggestion.)

My blog started back in May of 2005, admittedly mostly because I was lonely with diabetes.  I had lots of friends and community outside of my busted pancreas, but no one in my life who “got it.”  That frustrated me.  Made me feel lonely.  Contributed to feelings of isolation.

So I Googled “diabetes” and a long list of shit that would go wrong with my body as I aged came back as a search return.  Not fun.  At the time, I was 25 years old.  I wasn’t ready to think about my chronic illness in terms of a ticking clock.  I wanted more reasons to live, and live well, instead of reasons why I should tuck my islets between my legs (ew) and get ready to die.

Eff that.  I want to have a proper life after diagnosis, not one that’s dominated by fear.  Gimme some hope.

Which brought me to the blogosphere over a decade ago, and that desire to connect with people who intimately understand diabetes is what drives me to stay here.

Over the course of the last eleven years, my “message” has changed.  I’ve changed, so that makes sense.  When I was in my mid-twenties, I wanted to find others who were interviewing for jobs, starting relationships, living on their own, and making their way as an adult … with diabetes.  Confirming that a community existed, and was accessible, lit me up proper.

As I got older, I was interested in hearing about successful parenting with diabetes.  Not exclusively about pregnancy, because that’s not a thing for everyone, but about how families expanded through whatever means they felt were right, either through biological children, or adopted, or fostered, or kids of the decidedly furrier variety.  I really took a lot of pride in sharing my pregnancy six years ago, and again now, because it wasn’t perfect, or seamless, or without issue but hell, it was mine.  And it what I worked for.  And it was worth it.

When there were complications, I felt comforted by the community who had been there before me, and by the hope they provided as to life after diagnosis.  Same goes for diabetes-related depression.  Same goes for infertility.

Same goes for any moment in the last eleven years where I’ve felt alone or potentially isolated, but the community taps me on the shoulder and goes, “Wait.  You aren’t alone.  Turn around; we’re all in this together.”

There’s a level of support found in our community that I can’t properly say thank you for.  But I’m thankful.

Why am I here?  To share my story, as ever-changing as it may be.  To make a difference.  The stuff I share from my digital soapbox grows as I grow, leaving my goal simply to connect with my peers and to live well.  What am I trying to accomplish?  I still don’t know, but I have seen that I accomplish more, live more when I feel the support of community.

I don’t have a set “message,” but I do have a life, and it’s worth documenting if only to prove to myself that diabetes will not bring me down.

If anything, with the help of our community, I’ll force it to raise me up.

Perspectives on Diabetes: Why Children with Diabetes Matters.

People ask me why this conference matters, why the organization matters, and it’s sometimes hard to sum up.  What’s so great about sitting in a room full of people with diabetes?  Isn’t it like surrounding yourself with a reminder of something that is a pain in the butt (diabetes)?  Doesn’t it suck to talk about diabetes all the time?

DUDE.  NO.  This is kind of the opposite.  Being around people who understand diabetes doesn’t breed a boatload of discussion about it.  Instead, I’m sitting at a lunch table with folks who know the ins and outs of diabetes, but we don’t shout out our blood sugar results or bolus amounts.  It’s not like that.  We’re talking about what our lives are like outside of diabetes, about the life we build that includes diabetes, not built around diabetes.

People with diabetes wear green bracelets, to both alert to potential emergency situations (you see a green bracelet in distress, think glucose tabs in a hurry) but the green also threads together the people who are playing host to diabetes.

A quick glance at someone’s wrist lets you know that they get it.

Sometimes, when days are kind of rough, I’ll put on a green bracelet to remind myself that I am not alone. Support from the community is as important as the insulin I take; both keep me healthy, and keep me going.

But it’s not just the green bracelets that make this community so powerful. Orange bracelets are given to folks who don’t have diabetes, but who remain touched by diabetes.  My daughter and my mother came to Friends for Life with me a few years ago, and they were also able to connect with their respective tribes, the orange braceleters. My mother, after decades of raising me without a vast diabetes support network, was immersed in a sea of parents who understood so much of what she’s experienced as my parent. And my daughter, her understanding of mom’s diabetes expanding with time, was able to hang out with other little kids who had parents with diabetes.

This kind of support, community … whatever you want to call it, it matters.  I mean, you’re here reading on a diabetes-centric blog, for crying out loud.  Clearly we, as a group, have a pull towards one another and benefit from connecting.  For me, knowing I’m not the only PWD (person with diabetes) on the planet makes diabetes easier to handle.  This is a hard thing to build studies around and quantify how it affects health outcomes, but taking my insulin is easier when my mental health receives care.  My A1C has been consistently steadier since engaging with the community.  My level of diabetes health literacy has grown by leaps and bounds.  And diabetes scares me less, on the whole, because I am surrounded by people who are in it with me.

Whole person health, remember?  Diabetes doesn’t exist in a damn vacuum.


The annual Friends for Life conference is coming up this July, and if you haven’t checked out the conference, now is the best time.  There are also other regional conferences (Anaheim in September, Falls Church this past April) that offer the same connection and community on a slightly smaller scale.

Full disclosure:  I’m a board member for T-1 Today, which is the parent non-profit organization for Children with Diabetes.  My bias includes that, and the fact that I haven’t produced any insulin for the last 30 years.  If you’re an organization interested in finding out more about how to make a tangible difference in the diabetes community, please connect with me.  And if you are interested in making a charitable donation to support the organization, click here.  And thank you!

SUM Related posts:

Looking Back: Rules of Love.

Today, in response to spending the day fighting traffic for yet another installment of “how long will I be in the waiting room?” at the doctor’s office, I’m revisiting a post from 2012 about love, PWDs, and permission.  It still blows my mind that this book was published, and I remain appreciative of how far we’ve come.

See also:  eff off, Morris Fishbein, MD.

  *   *   *

In Austin two weeks ago, I had the opportunity to finally meet Josiah Hammer (known affectionately across the world as “The Hammer”), who works at Dexcom and is my direct point of abuse contact at Dexcom for when I screw things up.  [Editor’s note:  Hammer is no longer at Dexcom but is now over at Tandem, which is half the reason why I wanted to switch to Tandem because Hammer is majorly awesome.]

During the course of an email exchange, The Hammer sent me a page from an old health book that he found – the Modern Home Medical Adviser: Your Health and How To Preserve It (edited by Morris Fishbein, MD [who, according to many online sources that may be less-than-credible-but-still-cracked-me-up said that Fishbein was originally aiming to be a clown, but realized there was more money in medicine], published in 1942) which included a chart, of sorts, dictating who should shag whom.

Excerpts:

Only four rules. The shortest rule list a PWD has ever seen, to date. About dating. ;)

Of course.  Because all decisions of love are made with diabetes in mind.  There’s something about this chart that makes me both roll my eyes and then picture a diabetes Punnett’s Square.  Love is a tangled web as it is – plotting decisions against a diabetes graph makes things even more complicated.  Thankfully, good ol’ Morris was there to help people sort out who they should be smooching on.  (/sarcasm.)

This book also featured “blameful” and “blameless” diabetes, helping to drive home the misconception that type 2 diabetes is something people should be beaten with a stick for having and that type 1 is the result of hereditary circumstances (just like in my case, where I”m the only diabetic in my entire family, of any kind … /sarcasm once again).

The Blame Game sucks.

Sometimes I look at how diabetes is currently portrayed in books, television, and other media outlets, and I’m frustrated.  It’s a potluck of misconceptions, facts, and always colored by opinion, but it is slowly becoming more accurate, and more “real.”  People are learning about all different kinds of diabetes and the varying treatments, and the discussion about diabetes entering the mainstream is increasingly credible.  But iooking back at the so-called “medical books” from the early 1940s has blown my mind in a way that Steel Magnolias never will.

We have come a long, long way.  And I’m grateful for that.

Guest Post: Diabetes at Work.

When I asked folks in the DOC if they’d be willing to lend their voices and perspectives for a guest blog post, I was excited to hear from Susannah (aka @bessiebelle on Instagram and Twitter).  Susannah grew up in South Australia and is now working as a lawyer in Cambridge, in the UK.  She was diagnosed with type 1 diabetes during the course of her last year of high school (2000) and is currently using a Dexcom with her Animas Vibe insulin pump.  

Today, she’s taking over SUM to talk about diabetes in the work place, and how to handle the moments when discretion is preferred but diabetes still needs attention, and she’s looking from tips from our community on handling diabetes in the workplace.

  *   *   *

A significant aspect of my life with diabetes which I often feel is ignored is how it fits into my career. Diabetes goes with me to work everyday and has seen the highs (completing deals) and lows (being at work at 2am) of work and as well as sugar!

When I started to write this post about working life with diabetes I was armed with a list of anecdotes but I didn’t expect life to serve up another example of when the two worlds collide. One of the frustrating things that any diabetic knows is it can always throw you something unexpected.

After a seemingly average Sunday afternoon gym session Monday morning last week saw me battling a hypo that just wouldn’t respond (to glucose tabs, reduced basal plus bread with strawberry jam for good measure). With heart still racing and a foggy brain at 9am I emailed my boss to let him know I was somewhat delayed but I’d be in soon. Moments like this make me glad that I’ve been open with my boss about being a type 1 diabetic but also make me anxious that I will be judged as less capable because of it.

Am I the only one who feels like that?

The emotional side of diabetes creeps in too easily. After an experience like that morning I’m left worried that I’ll be judged because of it. Being late on Monday morning is the least of it… We all know there are the doctors’ appointments (6 monthly checks, annual reviews, eye checks, and other specialists – always longer than expected and involving long times in waiting rooms), hypos setting you back (sometimes only a few minutes, other times for much longer), pump sites pulled out causing hassle and even spurting fingers resulting in blood stained shirts! Some of these take up more time than others but they all intrude on what might otherwise be a normal day in the office. Something that I’m acutely reminded of when I’m filling in my 7 hours of 6 minute units of time each day.

I fear hypos at work more than anywhere else. I don’t want to explain why I’m sweating at my desk like I’ve been for a run or to be faced by a deadline but struggling to gather my thoughts clearly. I don’t feel any more comfortable in this situation now than I did when I first started work as a law clerk 10 years ago. Luckily, for many years I had the luxury of my own office and the ability to shut the door gave a level of privacy when required. Recently, I moved to an open plan firm and I am having to reconsider many things I took for granted with a (glass) door… pump site changes at my desk are a thing of the past (cue a few panicked mornings hastily inserting a new site and refilling so that I won’t have to later). I’ve been lucky not to ever have a hypo in a meeting, but this is not without taking care. Meetings with clients or all parties to negotiate a document are a balancing act of starting the meeting high enough not to crash but not so high that I feel sluggish. (and that’s not considering the blood sugar spikes from stress).

Thankfully there are the comical moments – taking a draft document to my boss and having to explain the red smudges on the print out (after 15 years it’s fairly easy to squeeze blood from my favourite fingers… I tested as I typed this and got blood on cue!); being in a meeting with the same boss and having my pump alarm go off – after a quizzical expression from a colleague my boss calmly commented “Don’t worry, Susannah’s bra is ringing!” Needless to say my pump alarms are strictly on vibrate these days.

There are moments that call for advocacy whether I feel like it or not. In a previous job I was surprised when HR requested that I remove my spare insulin from the work fridge or alternatively hide it in a container so other people didn’t have to worry about ‘contamination’. Why?! To this day I haven’t quite figured out who raised the concern (or why?!) but I defiantly ignored that request (with colleagues’ support) and also politely explained to HR that it was not a risk to anyone’s sandwich.

I’m always interested to hear how others handle disclosure with their employers (as well as see photos of their diabetes supplies stashed in their desk), and am always surprised by people who manage not to disclose it. I’m yet to perfect my ‘I’m busy having a hypo so please don’t ask me a question face’ so disclosure is what feels best for me. It may not be for someone else (YDMV). In contemplating my days in the office I realise I have it pretty easy if the worst is getting blood on a contract! I’m in awe of the many people who manage their diabetes while being responsible for others (whether a mother, teacher, nurse or doctor, just to list a few).

How do you handle your diabetes at work? Any tips on how to stress less?

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