National Diabetes Awareness Month

November 2020

And so concludes National Diabetes Awareness Month (NDAM) in the midst of a pandemic…

Staying home as COVID-19 rages on has given me much time to ponder the juxtaposition of how I used to feel about November in the early days of my own diabetes advocacy journey (rah! rah!), versus the ambivalence I feel lately. Perhaps the pandemic and our general societal burnout plays a role. Perhaps I’m just not as into diabetes advocacy anymore because it is not as new, and after almost 30 years of diabetes, I am sick of hearing about diabetes. But, mostly, it boils down to the very fine line we straddle during November: how we want others to learn more about the seriousness of diabetes, but we shouldn’t want anyone speaking on behalf of anyone else- whether the speaker has diabetes or not. I appreciate well-intentioned friends who want the world to be better for me and all people with diabetes. However, I never want November to be a pity party on my behalf. So this year, I didn’t say much.

The best advocacy I encountered this month was from diabetes families and individuals who have endured more than anyone should ever have to: rationing due to insulin pricing, premature complications and deaths, major life choices affected by the cruel burdens- financially, physically, emotionally- which diabetes constantly brings to the forefront, and much more. I wish none of these factors hurt us, but the reality is that these stories from the source are the most telling from November, or any other day in the life with diabetes. So, thank you to those who bravely advocated this month. You said it all far better than I could have, and during a life-altering pandemic, nonetheless. May your words reach those who especially need to hear them, and may more good change come for people with diabetes because of you.

Awake

What have I learned during this November, another ‘National Diabetes Awareness Month’ (NDAM)?

Call me jaded, but I am already quite aware of diabetes every time I poke my skin with one of hundreds of thousands of needles involved since my T1D diagnosis almost 29 years ago; or, when tweeting out the bat signal during a 4:07 am low blood sugar yet again interrupting a healthy sleep cycle, and seeing dozens of Twitter folks nodding in solidarity.

During NDAM this year, I felt a sense of “been there, done that.”  Frankly, at times, I did not even like this month- having the unwanted spotlight on me per se, as one member of the diabetes demographic.

November has its merits: sharing the warning signs of diabetes to prevent future death and disability related to preventable DKA; highlighting the high price of insulin; detailing why #weneedacure; finding much-needed new voices here in the diabetes community; involving people without diabetes in the diabetes cause.  All good stuff.

I suppose for me, personally, the pivotal “woke” advocacy moment did not occur this November, though.  Rather, it was in September 2019, when watching the peaceful protest video of Nicole Smith-Holt, hearing the anguish in her voice as she said her son’s name then, and continuing to hear it resonate now.  That is good advocacy- the kind that wakes you up, makes you think many months later.

Some media coverage of that September citation moment was passive in its reporting.  ‘Protester tripped and fell into a cop car’ sort of stuff.  Far from it.  Given the circumstances, Nicole and other advocates see a need for change, and they bravely and gracefully take action to get us there.

During November, I shared a few random tweets about life with diabetes, the hope for a cure, etc.  But mostly, I tried to do more listening than talking this time around.  As I tackle other challenges lately, diabetes has not taken up as much space in my world.  Perhaps that is a change of interests, my admitted privilege, or a combination of these and other factors.

But at the end of the month, it’s not all about me.  It’s simply about making our world better for all people touched by diabetes- honoring the past, present, and future.  Whether it is November or December, we have no other choice but to continue showing up to the diabetes fight.

Perhaps, here in the informed online diabetes realm, we are aware enough already.

The real question may well be: Are we awake yet?

In Memoriam

  • Alec Raeshawn Smith (26 years old; USA)

 

  • Shane Patrick Boyle (48 years old; USA)

 

  • Kevin Houdeshell (36 years old; USA)

 

  • Antavia Worsham (22 years old; USA)*

 

  • Others worldwide whose names we do not know

 

 

This list honors those confirmed to have died prematurely due to healthcare inaccessibility and/or* the high costs of obtaining insulin.  Sadly, these deaths occurred in the 21st century, at a time where cutting-edge treatments and healthcare benefits are hot topics.

We can and we must do better.

 

While I am normally shouting from the rooftops for a diabetes cure, this year feels different.  The diabetes community will never forget the names on that list, which speaks to their continued advocacy even after death.

My one ask on World Diabetes Day (WDD) 2017 is this:

Let’s not add more names to this list by the next WDD, or the next one, and so on.  The clock starts now.

 

The best memorial we can provide for those named here is to keep that list stagnant through our collective efforts.  Whether you identify as a fellow person with diabetes; someone who loves a person with diabetes; an employee of Pharma / PBM (pharmacy benefit manager) / insurance company / healthcare entity; an advocate; a non-profit leader or volunteer; an elected representative; a healthcare provider; or simply a human being with a heart, we must actively address this issue, together.

All politics aside, the only meaningful, mutually exclusive interests when it comes to insulin are life or death.  Particularly in the past year, we have encouraged a more open dialogue among many parties in the healthcare equation.  I hope that today reinvigorates us to keep moving that dial forward, toward more equitable opportunities for survival and quality of life for every person touched by diabetes.

There are many blog posts and articles out there detailing how this can be done effectively.  My little piece of WDD advocacy is not to reinvent that wheel today.  It is simply to ask us to reflect on lives lost too soon, and on so many others who fight convoluted healthcare systems all over the globe in search of insulin.

Keep saying their names.  May we hold their stories closely today, and always.

 

 

If you know of other names we can honor and remember here, please contact me to update the list.  Thank you.

 

*This post was updated on April 26, 2018.

 

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Hope in November

No, this isn’t another corny November election pitch.  I’m talking about hope during National Diabetes Awareness Month this November.  What better way to foster hope than to write letters to the families of newly diagnosed T1Ds?  You can learn more about @mumoftype1’s (Maureen’s) kindhearted project, Letters of Hope, by clicking here.

This is my Letter of Hope:

Hi!

Firstly, I want you to know that whatever you are feeling- anger, sadness, fear, anxiety, exhaustion, cautious optimism, a mix of all of the above- is totally okay.  Even many years removed from the hectic time of a type 1 diabetes diagnosis, you are still allowed to feel these things and to express them out loud, if you so choose.  Not everyone will “get it,” but some good eggs will rise to the occasion and offer support.  The aspect of diabetes that is not discussed enough is how you will see the light in others, and yourselves, more clearly now.  Empathy is just as important of a prescription as insulin.

With empathy in mind, I would like to share some diabetes advice that I wish my family had received upfront:

Life will go on, with some adjustments intertwined to ensure safety.  If your child was diagnosed with T1D, allow him/her to go to diabetes camp, or sleepovers, or field trips.  Have a preparedness plan in place: extra diabetes supplies packed, phone numbers to be reached in case of emergency, teachers who are aware of the diagnosis and know the basics of how to help.

Freaky diabetes situations will pop up from time to time, but trust in your knowledge and abilities to take care of things and to move forward.  Sometimes diabetes just has a mind of its own and you did not do anything wrong to deserve it; every new morning is a “reset button” where you have a clean slate to try again.  Above all else, your child will still get to be a kid, to enjoy school and sports and playdates.  If you are the type 1 diabetic of any age, you will continue to be the person you were before diagnosis.  Your perspective will change for the better; suddenly you will understand just how strong and resilient you are.

Words matter.  We “check” blood sugar, as “test” implies pass/fail.  “Manage” rather than “control” diabetes.  Remember that blood sugar numbers are not “good” or “bad”; they are a guide for making informed treatment decisions.  The person’s character is never implicated by a wacky blood sugar value.  It’s type 1 diabetes; wonky numbers will happen, and you will handle them- sometimes gracefully, other times not so much.  Remember that your job as a person with diabetes, or as a caretaker, is more complex than most people would ever realize; go easy on yourself.

Offer guidance in a supportive manner, rather than lecture.  The islet cells have misbehaved, leading to type 1 diabetes; but the person is never to blame.  Even if there are days where diabetes management seems to slack, remember what it was like to be a teenager yourself.  Be understanding.  Do not try to rewrite the diabetes wheel all at once.  Hone in on one time of the day that seems to need improvement- breakfast, perhaps- and start there to make the process manageable.

Diabetes discussions are inevitable, as you may collaborate on insulin dosing decisions, carb counting, and similar technical items.  Yet once you sit down for a family meal, try to leave diabetes behind.  T1D gets enough air time each day.  Dinner is for enjoying one another’s company, laughing about the funny anecdotes from work or school, being a family that is so much more than the diagnosis of a health condition.  Reserve that time for yourselves.  Take vacations and splurge a little; added insulin will cover ice cream for dessert, and your kids will thank you for giving them that freedom one day.

If and when you want peer support, there is a large, engaged community online- from Facebook groups to blogs to the diabetic online community (#doc) on Twitter.  These online interactions can lead to in-person meet-ups.  The friendships are real and the bonds are solid, whether they are formed online or offline.  We are here for you.  Although we have not met you in person, we are thinking of you and praying for you during this time of transition after diagnosis.

Sending love, and extra coffee!