diabetes

World Diabetes Day: What I Want You To Know

“What’s that blue circle on your Facebook picture?” is always a loaded question.

006

Firstly, as the international symbol of diabetes, the blue circle is like the communal social media head nod which symbolizes, “I get it,” to others like us who encounter the image.

Not everyone chooses to flash the blue circle, and that is okay, too. We all cope with this disease in our own ways.

Secondly, let’s be honest. The blue circle magnifies the attractiveness of any picture. It’s an unwritten rule. Blue circle = automatically cool.

Thirdly, there is a tale of strength and perseverance behind every blue circle. The story goes something like this:

When speaking to someone not intimately familiar with diabetes, I want that person to know that diabetes is not anyone’s fault. If you want to blame something, point the finger at rebellious islet cells, environmental factors, viral triggers, genetics, and the perfect storm of other elements. But please, do not blame the human being.

Society preaches the message that diabetes is a disease brought on by poor choices. “You ate too much sugar, so you are to blame for your type 2 diabetes. Just lose weight and you’ll be fine.” Phrases like these are tossed around daily in the movies, in comic strips, and in casual conversation. Yet the reality is that if any type of diabetes were so simple to acquire, the whole world would be diabetic.  

Type 1 diabetes, an autoimmune disease, does not discriminate according to who collected the most Swedish Fish from the birthday party piñatas as a kid. Instead, it strikes us innocently and without fair warning. We have lost children with their whole lives ahead of them this year because our healthcare system failed to identify the warning signs of diabetes in time. Extreme thirst, blurry vision, weight loss, frequent urination, and other symptoms should ring a “diabetes bell” in your mind after reading this. When in doubt, we implore you to play it safe and see a doctor immediately.

There are other types of diabetes, too: gestational diabetes during pregnancy, cystic fibrosis-related diabetes (CFRD), latent autoimmune diabetes of adults (LADA), maturity onset diabetes of the young (MODY), and other offshoots of the disease process.

Allow me to play devil’s advocate for a moment. Although no one singlehandedly causes any form of diabetes, let us pretend that the overly-simplified media theories are correct: Ally eats a cupcake, so Ally deservedly acquires diabetes. I “deserve” to take ten shots a day for the rest of my life. I “deserve” to wake up at 4:23 am with a blood sugar of 52 mg/dL, half the normal value, fighting to live- if I am even lucky enough to wake up before it is too late.

Now, substitute someone you love in place of our fictional Ally character. What if Ally was your sister, your father, your favorite high school Math teacher, your best friend? Can you accept the status quo of a world in which someone you love has to go through all of that to survive each day? Could you handle the emotional burden? Wouldn’t you get upset, too, when the severity of the battle was diminished by a corny joke on a TV show?  Isn’t the pain still there no matter what caused the disease?  Aren’t these people still important to their loved ones?

But, it’s no big deal because fictional friend/sister/father/teacher chose to eat the cupcake, right? (I’m taking my coffee with a heavy dose of sarcasm today.)

When we rationalize away the seriousness of this condition by poking fun of Wilford Brimley commercials, what we are really saying is that this is too much for our society to handle. If we laugh it away, we mistakenly presume that diabetes will not touch our lives at some point. Statistically and scientifically-speaking, that is a losing bet to make.

We must, instead, be brave and face the truth that defines this disease: Diabetes is no one’s fault, it is a profoundly-complex condition which is difficult to tame, and we owe it to ourselves and to future generations to lessen its toll by advancing technology and research.

The blue circle represents any of us and all of us. We have endured thousands of needles in our lifetimes. Diabetes changes its mind every day. Given the same scenario, what works on a Monday may not work on a Tuesday. Insulin sustains life, but each dose is an educated guesstimate. One miscalculation can be deadly.

We do not tell you these details because we want you to have a pity party for us. We can do anything. One of us, Sonia Sotomayor, sits on the Supreme Court of the United States. Others have run marathons, graduated from medical school, or written books. We have an enduring human spirit which rises to the occasion of fighting this disease every morning.

This November 14, when you see a blue circle on World Diabetes Day, do not simply scroll right by it. Pause and look at the faces behind the superimposed shapes. Recognize the human being who is affected by diabetes, who is more than a blue circle can ever truly describe. Marvel at his or her resilience. Perhaps donate your weekly coffee fund money towards a diabetes cure effort. Walk with us. Pray for us.

And the next time you hear, “What’s that blue circle all about?,” respond with a story about one of the strongest people you know- someone you love who lives with diabetes.

Thank you.

BetesOnTap selfie

^ Longtime type 1 diabetics, having fun despite diabetes  ❤

Advertisement

November, Polio, and Diabetes: A Lesson on Keeping the Faith

My grandfather was cured of polio as a child.

One summer day in high school, my friend pulled me aside at a barbecue and innocently asked, “Why does Papa have one skinny leg?”

“Polio,” was the only answer I could give.

His leg is atrophied from the polio, but the bounce in his step overrides the slight lag in his stride.  Life is good.  Family, friends, pasta, and red wine.  What more could an Italian grandpa need?

According to my relatives, Papa was blessed while riding on a parade float during the Feast of the Three Saints.  The polio disappeared after that.  I always thought that Jonas Salk played a hand in his cure, but perhaps I just really like the aspect of vagueness.  That’s where the faith is found, after all.

I will accept nothing less than a diabetes cure in my lifetime.  Plain and simple.  That faith will always be here.  When I am cured, I will hold onto that faith until every individual worldwide who is touched by diabetes receives the same renewed membership at quality of life.

Type 1 diabetes has dwelled in my body for almost 25 years.  It has undeniably left its mark.  Freckled fingertips.  Dexcom rashes.  Bruises galore.  As one friend recently joked, “You might want to leave those details out of your Tinder profile!”  Very true.

Diabetes has permanently affected my life, and yours.  I would be naïve to think that after 25 years, a cure will eradicate all of those diabetes handprints.  It won’t.  Some of the damage is already done.  But curing diabetes is also not all about me.  If I am going to be on this earth as a diabetic, if I have endured this crap for 25 years, if I know darn well how unrelenting some days are- then I cannot sit back and be okay with this in the 21st century.

We have the scientific brilliance to cure this disease.  We have the technology to cure diabetes.  And we most certainly have the motivation by which to accelerate research.  Look no further than any diabetes blog or heartfelt Facebook post by a D parent whose child just wants to eat cupcakes like the rest of the class, with no needles involved in the process.  Curing diabetes will involve faith, fundraising, advocating, and destigmatizing.  The #doc is well-suited to do this job.

It is 2015.  It’s about darn time for a cure.  I am excited about the pending technological options which will tide us over in the interim, but ultimately we need a cure.  If not for us in the here and now, then for all of the generations which will come after us.  It is our moral obligation to change this status quo.

November- diabetes awareness month- is about keeping the faith.  If my grandfather and his family had not believed that his polio would be cured- by whatever means- he may not have lived long enough to walk around the world free of leg braces, or to marry his high school sweetheart, or to still be madly in love so many years later.  He needed a cure, too.  He kept the faith, and he got the cure.

Keep the faith.  Advocate long and hard this month, and always.  #weneedacure

The Barter Games

Diabetes is kind of like betting on the horse with the most eccentric name at the Preakness.  I have a good feeling about that newbie, Langerhans, this year!  Make sure you bolus for Seabiscuit!

We’re placing wagers on our health with each best “guestimate” insulin dose that we take.  Every. day. until. we. are. cured.

“I’d rather hold a spider in the palm of my hand than take ___ units of insulin!” I proclaimed to my doctor recently.  Have I mentioned that spiders are THE. WORST.?

I barter with myself, too.  Take one more bite of the sandwich, Ally, and then shoot that Humalog into your stomach.  Too sore today?  Okay, which arm is the least bruised? 

Take the damn insulin!!!  Wait- is the sandwich 35 carbs, or 43.376?  Bolus half a unit more?  Oh, look, a butterfly!

IF you just go to the Endo and get the blood drawn now, THEN you will at least have answers- a springboard from which to make a treatment plan.  IF you do not go, THEN you will lack the guidance on where to begin.  GO. GO. GO.

My favorite teacher from high school lost her (adult) son in a tragic accident.  The pain was still raw many years later when I met her, and her writing took that pain and beautifully chronicled the human side of grief.  She once waded into the ocean and begged God to take her life instead, crawling back to the shore only when it became obvious that it was not her time to go.

“Take me instead of him.”  Either / or.  If / then.  Decisions, decisions.

If you do not replace the wonky CGM sensor before class, then you will have to go without that data for the next few hours.

I promise I’ll be good this week.  I’ll be brave when I bolus.  Just please don’t make this insertion hurt like the last time.

Eyes closed, driver’s seat, grocery store parking lot before grad class.

Please don’t hurt, please don’t hurt, please don’t hurt, please don’t hurt. 

Sensor is in.

It hurt.

My classmates have no idea why I was 3 minutes late.

If they ask, I’ll make them bet on the answer.

A 1 c.

My A1c was lower at my recent endo appointment.  Not by any earthshattering amount (and we still have a long way to go), but “lower” is enough for me right now.  In fact, my recent A1c was lower on a shots regimen than it had sometimes been while using an insulin pump.

I thought I’d write some overly-emotional, 2000-word essay on how much the lower A1c means to me being back on shots.  Instead, I’ll take my lack of wordiness as being one step closer to making peace with what happened to me and as a reminder to continue to advocate for others who need insulin.

Frankly, I am still bitter about how much I suffered due to defective insulin pump products.  A few tech glitches per year are understandable, as tech does not equate to properly-functioning islet cells by any means, nor should it pretend to do so.  But to have bi-weekly episodes of near-DKA due to tech issues is inexcusable.  It breaks my heart to think of other people out there who may be going through what I went through, who simply want someone to believe them and to make it all better.

Thankfully, through the support of the #doc and some topnotch doctors and nurses, I am still here, I feel alive again, and I am getting into a better diabetes groove on multiple daily injections.  The bruises are a visible reminder that diabetes does not go away no matter which treatment one pursues, but for me they are a small price to pay for the assurance that insulin gets into my body every day.

I’ve said it before and I’ll say it again: do what works for you, whether that be insulin pumping or injecting or artificial pancreas-ing or Afrezza-inhaling.  I just want all of us to feel good every day.  But I also want those who experience tech problems to know that they are not crazy or “bad” diabetics.  We are human beings; technology is technology; and, ultimately, #weneedacure. 

But what about the people who don’t have a plethora of options?  Having spent many days in bed with ketones when my insulin pump malfunctioned, I often find my thoughts traveling to Spare a Rose nowadays.  I will never take insulin for granted again.  When insulin was not getting into my body, I was like a fish out of water, slowly and painfully fading away.  Kids without insulin suffer like that each day.

We must work hard to improve their access to life-sustaining insulin. 

Diabetes is difficult enough to tame with insulin, never mind without it. 

The Dunkin’ Donuts Vignette

“I’ll take a small hot coffee, very light, no sugar,” my father said to the bored high school aged employee.

“And a lemon donut, too,” he almost whispered, hoping my four-year-old, newly-diagnosed-with-type-one-diabetes self would not notice the snack he was sneaking home.

“You want a plain donut?” he squatted down to ask.

With wide eyes, I scanned the row of baked goods in front of us.  Jelly, strawberry frosted, sprinkles- all of the things that even my young mind comprehended as off-limits.

“I want a chocolate one,” I said.  No harm in trying.

“No chocolate.  You can have a plain donut, okay?” Dad offered in a tone that feigned the appeal of a donut whose very name was inherently boring.

“I don’t care,” I replied calmly, the first of many times this phrase would be uttered mostly to convince myself that diabetes did not hurt me, but also to protect those who loved me from seeing that it did.

“Ha!  You can have a plain one!” laughed a stocky truck driver in line behind us.

Dad hadn’t heard him.  I buried my face into his leg while he paid for our order.

My lip quivered on the car ride home.

“What’s wrong?” Dad asked.

“A man in there teased me about the plain donut!” I screeched.

“What?!!  Who does he think he is?  You just remember- your Dad is the strongest man in the world.  Nobody will ever mess with you!” my father advised.

I chose to believe Dad over the late-1980s version of what we now call a “diabully.”

And the plain donut wasn’t that bad, either.

IMG_0941-0

Your Grandma’s Diabetes Vignette

“My grandmother died of diabetes,” my ‘boyfriend,’ Jake, mentioned offhandedly as we climbed rocks in the woods behind his home.

We were in fifth grade, and the act of dating consisted of parentally-supervised playdates a few times each month and the added privilege of swapping prince and princess Disney-themed Valentine’s Day cards in February.

“No she didn’t,” I retorted.

“Yes she did.  She got really sick.  I don’t think she had to take shots like you.  But the doctors said she died of diabetes.”

“People don’t die from diabetes.  It must have been something else,” I replied, shaking my head as if to dispel the prospect.

The thought had never really crossed my mind before.  I knew low blood sugar left me pale and shaking on the floor.  But did people actually die from this stuff?  I pushed the notion to the anxiety cupboard of my mind, a place from which I often plucked a topic to pester my mother about on the car rides home from school.

“Do people die of diabetes, Mom?”

“I don’t think that’s something you have to worry about,” was along the lines of her response- a well-played verse which straddled the line of truth just enough to shield me from the painful reality of the answer.

I packed the concept of death via diabetes back into the anxiety cupboard of my mind and closed the door tightly.  Why had he said it if it wasn’t true, though? 

Today I realize that Jake simply wanted his grandmother’s story to be heard, especially by someone who understood firsthand the turmoil of the disease that took his grandma away from Christmas mornings with her grandchildren far too soon.

If I ever walked into a bar now and happened to find Jake swigging from a frosty mug, I’d tap him on the shoulder and tell him that his grandma’s diabetes is different from my diabetes, which is different from your diabetes, which is different from Ryan Reed’s diabetes.

Then I would buy him a beer, apologize for his loss, and sit down and listen to his story.

A Few Good Nurses

For a couple of years, I have kept this story close to the vest, mostly because I felt quite vulnerable sharing it.  I still feel sensitive, but the timing is now right to tell the tale.  We are seeing many headlines in the news about nurses today.  As far as diabetes blog headlines go, I hope you’ll take a few moments to read this one and to thank a deserving nurse.

Winter.  I had recently started grad school and I was optimistically trying to do #AllOfTheThings.  This included a regular, intensive gym schedule, a disciplined diet, and very little sleep- just the right ratio of “healthy” ingredients to convince myself that I was not running on vapors in reality.

I booked an appointment with my diabetes nurse, as I was experiencing more frequent insulin pump site problems.  We needed to find viable locations for site changes, or perhaps to discover a different type of infusion set that worked better for my body type.  Also attending the appointment would be a nurse employed by the insulin pump company.

At the appointment, we had all of our diabetes ducks lined up in a row: various infusion set types, reservoirs, alcohol swabs, IV prep, and Humalog vials.

Historically, I stuck to the abdominal area for pump site changes.  We wondered if significant scar tissue had developed, causing the numerous pump site failures.

“Alright, can I take a look at your sites?” D (diabetes) Nurse asked.

“Yeah…” I replied, eyes darting to the floor.  I felt weak as I handed the control of the situation over to the healthcare professionals.  It’s my body, but now I have to trust someone else with it.

D Nurse gently felt around for scar tissue, but did not find much despite my long-term insulin pump usage.  P.S. (pump site) Nurse from the pump company inspected the same areas and came to the same conclusions: no scar tissue, but not much pump site “real estate” to work with.

“Geez, no wonder these sites are hurting you.  You don’t have much padding to use!” P.S. Nurse said, making eye contact with D Nurse as if to communicate, “This might be a difficult appointment…”.

In terms of pump sites, my extra sit-ups after the gym workouts were not helping matters much.  (Now that I am in my last semester of grad school, I assure you that extra sit-ups are a thing of the past!)

“You can try leg, back, or upper butt sites whenever you feel comfortable.  But for today, if you want to continue with the stomach, we can do that,” D Nurse said.

“Okay,” I replied nervously.

We all knew what was coming: the “trial and error” method of identifying infusion sets that would work well for me.  The nurses had to be sure that I was inserting the sets properly and that we were not overlooking a better option.  Like many diabetics, I have endured thousands of needles in my lifetime.  Although unpleasant, at some point you get accustomed to the momentary pokes and prods and you do not dwell on them.  Regardless, even at the age of twenty-five, it was a harrowing thought to know that my stomach would soon be a pincushion.

First, I showed them how I inserted my sets.  The process was automatic and quick.  The nurses agreed that I performed every step correctly and we could cross my name off the list of possible suspects causing the site failures.

“Your skin is tough- literally and figuratively.  I think you may be getting some resistance from the insertion devices, which could be kinking the cannulas as they go into your body.  Can I try an insertion?”  P.S. Nurse asked.

I nodded and allowed her to try without protesting.

“Okay, that was good but I felt the kick-back with the inserter.  What if we manually put the site in?  You could insert the needle by hand, without an insertion device, and perhaps you can curtail the bent cannulas that way,” P.S. Nurse suggested.

Whaaaat?!  I wanted nothing to do with that idea, but was also willing to try anything to get the sites to work better.  I made a feeble attempt at manual insertion and watched as the needle bounced back off my skin.  Defeated, I slumped down in the chair.

“Do you mind if I try it?” P.S. Nurse asked.

I liked how she always sought my permission before attempting anything.  The control was still in my hands to an extent, even though she now held the needle.

“You’re doing so well.  You’re so brave,” D Nurse whispered.  She wiped the dried blood off of my stomach using alcohol swabs, distracting me while P.S. Nurse prepped for the final insertion.

And just like that, it was over.  P.S. Nurse swiftly launched the needle into my side, and I did not feel more than a minor pinch.  We high-fived and hugged afterwards, proud of our hard work.

That appointment lasted a few hours.  While it may not have been as draining as receiving chemotherapy or undergoing heart surgery, I can tell you truthfully that it was an exhausting afternoon for all of us.  Emotions were high in the face of uncertainty, and we had to trust and communicate with one another.  If it hurt, the nurses were right there to make it hurt less.  Likewise, I had to admit when it did hurt, when I did need their help.

In my lifetime of medical appointments, I have felt the cold stainless steel of stethoscopes from nurses and doctors alike.  I can attest to the other tools that nurses use: infusion set needles, alcohol swabs, bandages, medical tape, bear hugs, TLC.  A few good nurses can change the entire course of an appointment, making it go from “scary” to “It’s going to be okay” as they work steadfastly to heal their patients.  Nurses often handle the difficult moments behind the scenes, with little fanfare.  They comfort patients like me when we are scared.  They make it hurt less.  And they deserve to hear “thank you” more often in our society.

One Year Later: Thank You

One year ago, on September 6, 2014, I was a shadow of the person who I am today. I was gaunt, hungry, and insulin-deprived, the result of months of insulin pump product defects and subsequent health problems due to medication delivery malfunctions. Alone and desperate for answers, I decided to start a diabetes blog from my tiny apartment in Rhode Island. Very Light, No Sugar was created, and technical insulin pump support, as well as general diabetes support, was sought. I thought that I was looking for biomedical engineering answers, but it turns out that I was really looking for something more powerful: empathy and understanding. The diabetic online community (#doc) rose to the occasion.

I distinctly remember, years earlier, sitting at my desk overlooking a soccer field during my junior year of college. I Googled “diabetes blog,” and clicked on sixuntilme.com. Wow, can she write!, I thought, as I nodded my head along with the words that I read and laughed at Kerri’s signature humor. At the time, blogging seemed like something really cool for other people to do, but not for me. I was too busy pretending that diabetes-related anxieties were not affecting my life negatively. What do I really have to say, anyway?

Reflecting on the past year, right now I want to speak to those who think similarly to how I did in college. Trust me here; you do have something to say and something to write. Go for it. The #doc is generally supportive and uplifting, and each member offers a unique perspective peppered with the common bond of diabetes, whether as those with T1D, T2D, LADA, MODY, cystic fibrosis-related diabetes (CFRD), or as friends/family/caregivers. We all “get it.” Your perspective is part of the larger fabric of diabetes which connects us all. Isn’t that voice worth sharing, then?

When I started Very Light, No Sugar, I was the epitome of the dorky new kid on the playground. I tweeted and retweeted and never stopped virtually talking. Even today, live-tweeting my emotions could land me on TLC’s My Strange Addiction. [Insert “thumbs up” emoji].

Back in September of 2014, some criticisms labeled the #doc as too “exclusive.” I had only been in the #doc for a few days or so, but my first impressions of its friendliness meter were positive. So, I threw myself into a Twitter conversation amongst many “#doc pioneers” (i.e. the “big names with big hearts” whom we all love- no need to name-drop here) regarding how to make everyone feel welcome.

Much to their credit, the #doc pioneers did not bite at a newbie who had very little perspective to offer at the time.  To be honest, I did not really belong in that conversation. But they entertained my rookie thoughts, which went something like, “THE #DOC IS GREAT. EVERYONE IS COOL. BE FRIENDS WITH ME!!!” (I’m blushing as I write this). My point here is that when you start a blog, you cannot possibly be as nerdy as I was, and the #doc embraced me. Sooo, again- go for it!

My largest piece of blogging advice would be to foster genuine connections, which begins with being your authentic self. If others take the time to comment on your blog or to tweet at you, write back! Understandably, there are some #doc superstars who get inundated with messages; it is unfair to expect that they can respond to every single one. But for me as a “humble beginner” blogger, I had a lot of time on my hands. So I took an extra few minutes to engage with my audience, and I now consider many of those who I interacted with to be my friends. Also, dive into weekly chats like #DSMA and #DCDE for helpful advice and comradery.

Find your balance. Share as much or as little as you choose, but know that if you open your heart to the #doc, they give great big bear hugs of support. I will forever be indebted to Laddie and Cherise for sharing my Broken Record blog post about my insulin pump issues. The response was more than I ever could have garnered on my own, and it helped me to make the difficult decision to try insulin injections again. (In particular, Caroline’s reassurance that it would be okay sticks out in my mind; thank you.)

While I still have room for improvement in my diabetes management, I can say that I have grown into an emotionally-stronger person through this experience.  I have also learned that each person’s diabetes management choice is a very personal one; do what works for you.  We have plenty of options, and nothing has to be permanent.

Although we are unique individuals, we make up a larger whole- a powerful, inspirational, worldwide community.  At the time of publication of this post, my blog has been viewed in 58 countries, from here in the United States to Madagascar to Afghanistan, and many more globetrotting locations. That fact, in and of itself, has made me a better person. I am no longer desperate and alone. People from all over the world understand and support the same fight against diabetes.  All I can say is, “Wow!”  Although I wish that this disease did not touch so many of us on an international level, it is humbling to know that we are all in this together.

Thank you for hearing me out on the good days and the bad days, and thank you for allowing me to do the same with you. Thank you to those who email or message regularly with me (you know who you are); I cherish the wisdom, strength, and support found in our virtual Pen Pal notes. Thank you to those in the Boston area who came together for our inaugural #BetesOnTap meet-up, which offered social support for diabetics and filled a void in my heart that I had not quite acknowledged before.

I write often about electronic forms of communication, but- with her permission obtained beforehand- I want to note that my first old-fashioned mail came from Hope Duncan in New Zealand (NZ). I admire Hope so much for the wonderful example she sets for youth with diabetes. She is also one of the most talented artists out there, and I encourage you to check out her creations on social media.

Hope’s gift still sits atop my fireplace mantle, a spot reserved for cherished items. Her card explained the gift’s background, stating, “Well, it’s a marae, a little piece of NZ for you in the States. 🙂 The native people in NZ are called Māori and their meeting places are called marae (said like ma-rye)… I hope you can fit it all together. I taped the pieces where they should go, so hopefully that helps.”

Hope marae pic

The marae model (pictured above, along with Hope’s card) represents the #doc to me: a meeting place that feels like home, where all of the puzzle pieces fit together as part of the larger story of community.

One year later, I still want a cure for diabetes to help our community, our marae. I still hope and dream and pray for it every day.

One year later, I am motivated to achieve better health and to try new approaches if needed. Through the #doc, I have a safety net of support to catch me if I fall or to cheer with me when I succeed.  Likewise, I hope that in my own way, I have given the same support back to some of you.

One year later, I look forward to fostering new friendships and learning more in the online world of healthcare interactions, particularly with Stanford Medicine X (#MedX) coming up shortly.

One year later, I still drink very light, no sugar coffee, and one year later, I still lift my coffee mug to all of you.

Thank you, #doc- for everything. Thank you for who you are and for what you do, for advocating long and hard, for listening, for talking, and for caring. You inspire me every day, and I feel so blessed to consider you my friends and diabetes family. Cheers to many more years together!

Love always,

Ally

The Balancing Act

IMG_0283

This blog post appears as part of Diabetes Daily’s Diabetes Social Media Burnout Day.

Much like diabetes is a balancing act between the highs, the lows, and everything in-between, so, too, is social media advocacy.

I find myself pulled between extremes: excited when having a great day, frustrated when things go awry. How much should one vocalize these feelings? It is no secret that I wear my emotions on my sleeve, especially on Twitter. But I always hope to lift others up by being transparent with my diabetes experience, rather than to tear down anyone’s mood by being too-transparent in a Negative Nancy moment. Again, life is a balancing act.

On the one hand, I am so proud and thankful to be a part of the diabetic online community (#doc). I want to scream it from the rafters so that my non-#doc world knows how great it is. But on the other hand, I love my #doc cocoon just the way it is: bursting at the seams with people who “get it,” devoid of judgment from those who do not “get it.”

The #doc may have differing opinions on various topics (Should we inhale insulin, or inject it, or pump it, or pray harder for a cure?!!!), but at the end of the day, we all understand without needing to say much. We know how tiring it can be when the CGM line continues to drop down no matter how many juice boxes are guzzled. The non-#doc sphere requires some introductory, explanatory information in these, and similar, circumstances.

For example, there is a large difference in screaming, “I’m high!” to my diabetic relative, versus yelling the same phrase at a baseball game and receiving some weird looks in response. I can Instagram a picture of an empty Juicy Juice box on my nightstand, and the #doc immediately understands. Whereas I may need to explain to my non-diabetic friends why overnight hypoglycemic episodes can be dangerous. Most of the time, I enjoy educating others about diabetes. But especially during times of burnout, I simply want to get on with my day and push diabetes aside.

There is a weird juxtaposition of advocating outside of #doc territory.  I often want society to respect diabetes for the jerk that it is, so I may post a picture of a CGM graph showing 55 mg/dL with a slanted down arrow.  As in, “Wow, I survived that sh*t!  Heck, yes!”  The media does not always portray just how strong we are.  We deal with life-threatening lows and highs, and we start over the next day.  Some of us have not been so lucky, and we mourn their losses and raise awareness for their stories.

Yet these measures of advocacy often draw out the questions that make my skin crawl.  “Is your diabetes still bad?”  You’re missing the point.  Diabetes is an enormous Swear Word, a complex beast that we do our best to tame.  If I’m talking about diabetes often (I am), it is because I want you to hear my story and to respect it.  The non-#doc Wilford Brimley anecdotes provided in response often add to the feelings of burnout.  Social media is overwhelming sometimes, and I can be my own worst enemy when in a cranky high blood sugar-induced mood.

Diabetes isn’t Burger King, and we can’t always have it our way. I cannot simultaneously expect the non-#doc world to understand more about my personal life with diabetes if I do not let them peek inside my #doc cocoon sometimes. They know Ally already, but do they know that I take my coffee very light, no sugar? Some do, and some do not. In order for me to be a better advocate, I do not have to tell every detail to everyone. But I may choose to explain that I am grumpy due to high blood sugar or why I believe so wholeheartedly in finding a cure for diabetes. Achieving that balance of what to share and when to back away from over-sharing can be a difficult tightrope to walk in the heat of one’s emotions.

Generally, I find the #doc to be a very supportive environment, willing to listen to each person’s shared, yet unique, experience with diabetes. If I ever feel stressed out about blogging, then it is simply not the right time to be blogging. It is a purposeful hobby which I enjoy greatly, and I never want it to feel forced.

As for “diabullies,” or internet trolls, or cinnamon-cure-enthusiasts, I have been tangled up in a few instances where no matter what I said, the hole seemed to get dug deeper with them. My intentions here will always be good, and I believe that we should all be able to respectfully agree to disagree if we choose to do so. If a person hiding behind a keyboard is especially cruel, I try to remember that said person is hurting. Bullies target others to distract from their own pain. It does not make it right, but we are all human and we all make mistakes. We should hope that internet bullies one day find the type of love and support that we have within the #doc.

So there you have it: the diabetes blogosphere balancing act. Am I high? Am I low? Am I happy? Am I sad? Should I advocate harder? Should I let others into the #doc cocoon? Is that a friend? Is that a bully? Do we all experience our own versions of diabetes, whether as T1D, T2D, LADA, MODY, CFRD, caregiver, friend, family member? Aren’t we all in this together? And aren’t we all in it for the right reasons?

I believe that we are indeed here for the right reasons, and we share our stories as they unfold.  If you need to take a #doc break because you are genuinely burnt out, then by all means, go on hiatus in the spirit of maintaining authenticity. That, in and of itself, can be a valuable aspect of your own diabetes story. 

“Uh-huh.”

When I adopt my future child (see here), the phrase “uh-huh” will probably be worthy of a “Swear Jar” donation according to Ally’s Little Book of Rules.  (All proceeds will go directly to diabetes research- let’s chill out, please!)

“Uh-huh” offends me not because of what it says, but because of what it does not say.  It is an empty phrase which does not even pretend to hide its indifference.

I will be the first to admit that I tend to get overly excited about nerdy diabetes-related things.  I follow diabetes stocks and press releases on my cell phone, enthusiastically peruse the blogosphere, keep up with DiaTribe and DiabetesMine articles, and look for every opportunity to discuss the information I devour.  I have pledged to my doctors on many occasions that I will take a break from healthcare information overload, but it proves to be a difficult task when fighting for your health every day.  Diabetes and healthcare are interests which are inextricably intertwined with my very existence.  They are not the totality of who I am as a person, but they are passions of mine with very stubborn “off” switches.

However, diabetes and healthcare are not everyone else’s passions.  So when I am rambling on and on at happy hour about the latest blood glucose meter technology or that one time I ate the entire carton of ice cream during a nighttime hypoglycemic episode, I need to take a step back and realize that others may not be quite as into this stuff as I am.  Fair enough.  If I could be cured of diabetes tomorrow, I would jump at the chance.  Although I suspect that my interests in diabetes and healthcare may not subside once I am cured, I would not mind finding a new, less serious interest to take up some of my time.  Badminton, anyone?

“Uh-huh” is suitable if I am boring you at the bar with a story that you do not really care about.  “Uh-huh” is not acceptable if I am talking about something deeply emotional that affects my health.  Dexcom software upgrades are one thing, but my personal health triumphs and tribulations are quite another.  If I am describing a diabetes incident that spooked me or a frustrating few days of persistently high blood sugars, I am opening up to you because I want you to hear me.  I trust you.  I want you to value what I am saying as important, to empathize, to not pretend that you know the answers but to simply be there for me nonetheless. 

When you say “uh-huh” on the other end of the phone and change the channel on the television running in the background, what I hear is not “uh-huh.”  Instead, the message conveyed is, “I am sick of this same old story.  Diabetes sucks.  I get it.”  You know what?  It does suck.  And it may continue to suck.  It’s diabetes, and it’s a selfish jerkface.  Sure, I have experienced a rough year of diabetes transitions (insulin pumping to MDI to every emotion felt along the way), but I do not get to “uh-huh” away this disease.  I sure as heck hope that it is not especially difficult every day until there is a cure, but sometimes there are long stretches of time where diabetes is a royal pain in the a$$, whether or not we are talking about Lantus burn at backside injection sites.

We are all human, though, and I caught myself “uh-huh-ing” a friend last week.  My coworkers and I are working from home a majority of the time now, a nice perk for those of us who require multiple cups of coffee before we are properly-functioning each morning.  The downside to working at home is that we do not have one another within walking distance if we need help.  Recently, my friend (let’s call him Jason) called my cell to seek advice on a difficult case.  My blood sugar was a bit rocky in that moment, and I felt the familiar brain fog that accompanies those overtired, rollercoaster health days.

“I’m thinking if we use this regulation, I should be denying this issue,” he said.

“Yeah, but I just emailed you the updated guidance.  We can grant benefits only if that particular symptom is present, which it is here,” I replied, as we went back and forth with medical evidence and legal stipulations to try to make the right decision.

The more we interpreted the guidance on the case, the more I found myself nodding and saying, “right, right, uh-huh” as I clicked through online documents, only half-paying attention to what Jason was trying to tell me at this point.

Frankly, I had made up my mind about what we should do on the case five minutes earlier, and I wanted him to be on the same page.  Eventually, our viewpoints fell somewhere in the middle and we were able to move forward.

The moral of the story is that everybody “uh-huhs” now and then.  At times, I am guilty of what I am critiquing here, too.  So what are we going to do to fix this?

Society often incorrectly relates empathy to having actual experience in the particular situation occurring.  For example, a cancer patient can empathize with another cancer patient, but a person untouched by illness cannot offer any valuable input.  I do not personally believe this.  First off, every person’s cancer or diabetes or death of a parent or any other difficult cross to bear has its own nuances.  We are all different people from different backgrounds with different struggles.  But the common denominator is that we are all human beings.  Because of this, we all know how to empathize.  It does not mean that we have to experience carbon copies of one another’s pain.  Rather, we simply have to offer up messages of support.

Instead of saying “uh-huh” when I describe an aggravating diabetes day, say something like, “I’m sorry.  That sounds so tiring.  Let me know if you need to chat later.”  Please listen.  If I wanted to talk to an empty space, I’d jump rope to the beat of a diabetes jingle or throw a tennis ball against the wall while collecting my thoughts.  But instead, I have chosen to tell you, someone who is so important to me and my diabetes fight.

Acknowledge my pain, but do not feel like you have to magically erase it for me.  Do unto others as you would have them do unto you.  Nowhere in that verse do I hear the phrase “uh-huh.”

I pledge to support you in the same ways that I want to be supported- devoid of “uh-huhs” but generous in understanding.  If I do not know what to say, I will attempt to think twice before muttering an empty rationalization.  “At least it’s not XYZ” belittles the struggle.  Instead, I’ll speak the truth next time: “ABC is very difficult.  Please know that I’m here for you.”  We cannot suddenly cure illness overnight, but we can make a more concerted effort to see each other through tough times.

From now on, let’s walk together, instead of “uh-huh-ing” each other.  Promise?