The Paradox of "Juvenile" Diabetes

Hi y'all!

I know I haven't posted in ages - sorry about that.  Second semester is even busier than first, which I didn't think was possible!

First things first: I know I left y'all on a bit of an unintentional cliffhanger.  I spent a decent chunk of my winter break in and out of hospital getting tests, etc, and the results were better than expected!  There are things we need to keep an eye on, and more tests to be done, but for the moment, we've avoided the worst-case scenario we were bracing for.  Yay!

Today's post is part information and part rambling reflection, just because that's where my mind is right now.  If you're a PWD (or if you've been friends with me for long enough, which as far as I'm concerned makes you a PWD-once-removed), a lot of the info won't be new to you, but stick with me.

So, all y'all know that I've done a lot of advocacy work for JDRF, including my congress trip that I've written about pretty extensively on this blog.  I've been involved with this organization since the year after my diagnosis, and while there are some things about them that I don't condone or agree with, I am proud of the work I've done and of the progress the group has made.

When I first joined JDRF, the group name wasn't just an acronym; it was spelled out: Juvenile Diabetes Research Foundation.  This was the name from decades ago, when JDRF was first founded, back when T1D was commonly referred to as "juvenile diabetes."  A few years ago, JDRF dropped the words behind the acronym - I've never been able to understand why they didn't just find a new name, but the point is, they took a firm step in moving away from the "juvenile" label.

There's a good, obvious reason for this change: the name "juvenile diabetes" simply isn't accurate.  Yes, it's true that many of us (myself included) are diagnosed in childhood.  And yes, this is one of the many things that separates us from T2D, which is usually diagnosed in adulthood (though this, too, is inaccurate for some patients).  But there are plenty of people with T1 who were diagnosed in their twenties, thirties, or sometimes even later in life.  This is one example of how the terminology we use to discuss conditions like T1 is constantly changing and becoming more accurate.  There are still doctors, researchers, and professors who use this term, and I get it - change is hard.  But it's a distinction that's important to me, and to a lot of other PWDs.  Nowadays, most scientists consider "juvenile diabetes" an outdated label.

And then, of course, there's the less scientific side.  When we refer to T1D as a "childhood" condition, what does that really mean?  Because the fact is, being diagnosed with T1D, no matter how good your support system is or what devices you use to manage your condition, is in many ways inherently a childhood-ending event.  There's a reason chronically ill kids get so tired of hearing about how "mature" we are.  It's not a choice; it's necessary for our survival.

I've told y'all before that when I was diagnosed, my parents and care team had the goal of making my condition as small a part of my life as they could.  But in retrospect, that was never really possible; in a sense, I stopped being a kid the moment that diagnosis was written on my chart.  In the years that followed, I existed in that strange in-between state that many of my fellow PWDs probably remember: a child carrying a bigger burden than many adults will ever face, constantly aware of the fragility of their own survival and their own responsibility to preserve it.

As a kid with T1D, you learn very quickly that the world isn't fair; for me, that was embodied in the process of accepting that for the first time, my twin, who had always been my equal, could do many things that I no longer could.  But more importantly, you learn that there are problems that you have to bear alone, that no amount of support from family or friends can completely fix.  My diagnosis gave me a new practical skill set, of course - how to calculate carb ratios and administer injections, how to tolerate pain and find my body's limits - but it also taught me how to hide my hurt, how to be brave when bravery really just means "live with this pain and don't complain about it."

I know it sounds like I'm being dramatic, and maybe I am.  But I was thinking the other day about how the last time anyone in my family saw me cry because of my condition was when I was 8 years old, and the last time I actually cried because of my condition was last week.  And I'm thinking now about how my endo's promise that my condition wouldn't stop me from doing anything was as much a condemnation as a reassurance, because the second half of the sentence was left unspoken: "T1D won't stop you because you won't let it."  So I spent my childhood learning how to not let it, no matter what the cost.  And that shaped me into someone very, very different from the child I was before April 21, 2010.

So the truth is, T1 shapes us, ages us, from the moment we become aware of it.  Its impact is the sum of countless recesses spent in the nurse's office, birthdays and holidays spent in hospital - but also of the quiet voice in our heads constantly reminding us that we have to do the jobs our own bodies can't do in order to stay alive. That's not exactly a "juvenile" thought, is it?

And regardless of the promises made to me during that first hospital stay, my condition has become a fundamental part of me in every way.  My perfectionism, the way I worry about the people around me, the way I hate asking for help and the way in which I approach problems - I don't know how much of each of these traits is inherent and how much is the mark that T1 has left on me, because it's impossible at this point to separate the two causes.  Would I be the person I am today if I'd had a normal childhood?  Probably not.  Would I be where I am today if I hadn't been forced to grow up overnight at 7 years old?  I doubt it.  So while there are times when I miss the innocence I didn't get to have, at moments like this, it all seems worth it.

Diabetes Awareness Month: The Good, The Bad, and The Future

 Hi y'all!

Hope everyone's doing well!  I'm alright - getting through my first semester of college, surviving midterms and marching band and substituting too much coffee for too little sleep.

So anyway, it's Diabetes Awareness Month (AKA the birth month of literally all diabetics - I don't make the rules).  My November so far has been full of plenty of T1D things - I participated in an Omnipod wearability study, wrote a mildly concerning number of emails to Senators and other government officials, and got into at least one heated email debate with the office of said officials.  (Pro tip: if you put the words "with all due respect" in front of a sentence, the sentence itself can be as disrespectful as you want!)  I got lots of tests done, received some not-great news, and did a lot of reflecting about what comes next.

Let's unpack all that!

The Good

• Baby's first trial!

A few weeks ago, I participated in a 5-day trial for an Omnipod prototype!  The device itself was deliberately ineffective - it wasn't made to deliver insulin, so I was still injection-dependent throughout.  My job was to test the adhesive to see if it could last 5 days, and to evaluate how comfortable the prototype felt.

Now, y'all know I don't wear an insulin pump, so this was a totally new experience for me!  The device was big, and the site wasn't my favorite - they asked me to test it on my lower back, which isn't ideal for someone who wears a backpack all day.  But even with that working against me, it was amazing how quickly I got used to it.  The device stayed on the whole time, and similar to my CGM, I hardly noticed it after the first day or two.  It definitely got me thinking about my own future and the possibility of getting a pump at some point...

• Independence??

College, y'all!  It ain't high school!

The learning curve has been steep, for sure.  But honestly, it's been really validating to realize that I'm capable of managing my condition on my own.  Don't get me wrong, there have been some difficult moments - but on the whole, I'm proud of how I've handled it.  I know "no trips to the ER" sounds like a low bar, but if you're a PWD, you know that's something to celebrate.

And another thing - I've somehow managed to find a group of friends who are absolutely wonderful about all my health stuff.  I mean, I literally had a friend who left his dorm and walked halfway up science hill to bring me candy when my blood sugar was low.  All of my friends put up with my endless complaining about my blood sugar, and none of them stare or ask awkward questions when I do my insulin in public.  I'm not sure how I managed to get so lucky, but hey, I'm not gonna question it.

The Bad

• Burnout is real, folks.

Yep.  It's hard.

The thing about managing T1D on my own, with no one nearby to help me when it's one of Those Days (PWDs, you know what I mean), is that the exhaustion sets in really quickly and doesn't go away.  Y'all have heard me say this before: T1D is a 24/7 job with no breaks, no respite, ever.  And when you're dealing with it on your own on top of a full college schedule, god, it's overwhelming sometimes.

So there are days when it's all I can do to force myself to take my insulin.  And yeah, there are days when I can't even do that.  Most of the time, it's not that bad, thankfully.  But the bad days happen, and they'll continue to happen, so I get through them as best I can and wait for things to get better.

• I Am So Tired of Self-Advocacy: the title of my rage-fueled memoir

Okay, I know I've written here about my journey with accommodations.  Overcoming the shame that came with asking for help, and then realizing that that was only the first step of a long and arduous process.  Well, guess what?  In college, it's the same, only there's no parents or advisor to advocate for you.  It's all on you.

Getting my accommodations at Yale has been quite the ordeal.  It took months to even get a response from the Student Accessibility Services office, and another few weeks to get my request formally approved.  And then, of course, one of my professors found a loophole in the accommodations I'd been given, essentially penalizing me for stopping to treat a low during exams.  Yay. (/s)

So back to SAS, another round of emails, a meeting with my dean and another with the office, and I finally got a new set of accommodations approved.  I was lucky that I had an amazing peer mentor (who also has T1D and is an amazing person!!) to help me through the process, but even so, I was frustrated with how much responsibility fell on me to essentially annoy SAS into listening to me.  I know I'm looking at a lifetime of this - that's just part of living with a chronic illness - but that doesn't make it any easier.

The Future

• Being both doctor and patient

One of the coolest things I've gotten to do at Yale has been shadowing in the hospital!  I've had the chance to observe several incredible procedures in the OR and interact with patients in a clinical setting.  As an aspiring surgeon, I've loved getting a firsthand look at what my life will be like a decade from now - even when that means I have to stop and consider how my condition will impact me in my career.

I will say, I've gotten pretty good at keeping it on the down-low.  I keep one pack of fruit snacks, two syringes, and one vial of insulin in the pocket of my scrubs, and if I need to treat a high or low, I just step into a corner and do what I have to do, as quickly and quietly as possible.  (The great thing about being surrounded by healthcare professionals is that no one stares or makes rude comments when I pull out a syringe!)

I'm learning what my limits are - how long I can go in the OR without food or water, how low I can get without my hands shaking, etc.  I'm aware that my condition will be a barrier for me in a surgical career, but I'm confident that I can manage it.

• My Body Has Found a Fun New Way To Express How Much It Dislikes Me: the title of the exhaustion-fueled sequel to my memoir

If y'all have been following my blog for a while, or if you've gone back and read some of my old posts, then you know T1D isn't the only health issue I've been dealing with.  Without going into too much detail - because nothing is certain right now, and likely won't be for the next several weeks - I recently got my yearly tests done, and one of them raised a pretty big red flag.

So, I'll get some more thorough (translation: invasive) tests done over winter break, and until then I'll hope that the doctors' suspicions, and mine, are wrong.  Obviously, I'll keep y'all posted no matter what happens.  Till then, don't worry too much - I'm in frequent contact with my doctor, annoying him with an incessant stream of questions, true to form.

That's all for now, folks.  I'll post again in a month, one way or another, because that's when I'll have test results.

Love y'all!

Overnight Low Journal

Hey y’all!

So, I started college!  I’m now 1 month into my first semester at Yale.  It’s so fun but absolutely exhausting, not helped by the challenges of managing T1D effectively on my own.

I thought I’d try something new for this post!  Y’all know that I struggle pretty badly with overnight lows (my endo has pretty much given up on fixing them at this point - we’ve tried everything, lol).  So I decided that for 1 week, whenever I had an overnight low, I’d open my notes app and write down what I was thinking!

If y’all know me, you know that I have no filter when I’m low - especially when I’m both low and tired.  So I apologize for the uncensored nature of what you’re about to read - but hopefully it’ll make you laugh and also give you a glimpse of what it’s like to wake up with low blood sugar night after night.  Here goes!

4:12 AM, sep 17. 49 and steady.

i actually originally treated the low 15ish minutes ago but forgot that i had this idea to write stuff down - and also i was so shaky and disoriented i doubt i could’ve written anything before now anyway. (thank god for autocorrect because otherwise this would be unintelligible.) i’m gonna prolly be up for a while because this is one of those having-trouble-breathing episodes and that always gets my adrenaline going… tempted to just get up now since i have to be awake in 3.5 hours anyway. but i’m still so tired. here’s hoping we get above 60 soon so i can get another sleep cycle in before morning!

For context: I’m generally supposed to wait until my blood sugar gets out of the danger zone before falling back asleep, because if it continues to drop, dex won’t beep again and it would be very easy for me to slip into a coma without anyone noticing.  So that’s what the “above 60” thing is referring to.

3:48 AM, sep 18. 48 and dropping.

gotta love a new sensor, right? this def isn’t an error because i’m 100% feeling it, but I think the fact that it didn’t wake me up sooner was prolly an error. yay. not feeling super horrible - just really dizzy, but that’s nothing new. I’m so tempted to just fall back asleep right now, but *safety first*, right? we’ll see if I can force myself to stay awake for this one. no promises. lol it would be kinda morbidly funny if those were my last words bc I fell asleep and didn’t catch it dropping again. do they count as last words if they’re typed and not spoken? do non-chronically-ill people think about this stuff as often as PWDs do? bc lemme tell ya, we think about it all the time. ok I feel like this is just incoherent rambling at this point, so i’ll sign off here. g’night!

Note: Yes, we think about this stuff a lot.  It’s no exaggeration when I say that waking up in the morning is an accomplishment on its own, because when your body is constantly trying to kill you, sleep is incredibly dangerous.  Especially on the first night of a new sensor, like this one, when it sometimes fails to provide the proper alerts.

3:56 AM, sep 19. 56 and steady.

why am I awake why am I awakeeeee dex didn’t even beep yet because this isn’t an “urgent low”, but damn, it sure feels like one. remind me to calibrate in the morning because I’m guessing it’s at least a little off. also - I have to remember to put more fruit snacks by my bed, because this is my last pack and if I go low again I’m gonna have to get up and that might wake up my roommate. I’m so glad she’s a sound sleeper bc otherwise she’d get woken up pretty much every night by me and my apparent inability to control my blood sugar. you’d think 11 years would be enough time to be good at dealing with this, but here I am, feeling like an idiot because it’s 4am and I just want one night where I actually sleep through the night.

Note: The following night I had to pull an all-nighter to finish an essay, so I was snacking and therefore didn’t have any lows! But also didn’t sleep.

1:46 AM, sep 21. LOW and steady.

fuck. not sure how it got this low without me waking up but ughhhh earlier today it was above 400 and now it’s below 40 which means I feel like I’m actually dying, lol. so dizzy, everything is blurry, hands are so shaky that I can barely hold my phone, let alone type. trying so hard not to black out. that’s what I get for overcorrecting ig? I don’t mean to sound like I’m complaining (even though I am… lol) but I went to bed already feeling like I was at my limit with t1 stuff and now it’s 2:whatever in the morning and even now I can’t escape it, ya know? and yes, I have a 9am class tomorrow, so I’m gonna be falling asleep in class (again). ok - done complaining for now - gonna prolly be awake till it gets above 50ish and then hopefully I can get some decent sleep.

3:01 AM, sep 21. 52 and steady.

I have nothing further to add except that this sucks and I wanna be asleep.

For context: double lows (or triple, or whatever) are the worst.  If I go low multiple times in one night, especially if one of them is below 40 like this one was, I’ll be feeling it for the next 24 hours - headache, noise/light sensitivity, fun stuff like that.  Sorry for the bad language, but 2am me was really mad about that one.

3:49 AM, sep 24. 42 and steady. 

oddly fitting that this is my last entry in this funny little journal. i never ended up calibrating the other day (should reeeeally do that!) and wow, 42 steady when it’s actually prolly more like 32 feels… exactly how you’d expect. which is to say, bad. i realize i sound like i’m complaining and i’m so sorry about that!! i sorta am, but also i swear i don’t mean to. this really isn’t so bad - the rain sounds pretty and there’s something quite nice about being awake but not having any work to do except backread the happy campers group chat (shoutout!). also for some reason even though it’s lower now than it was when i first woke up, i feel better? like, i can breathe now and my heartbeat isn’t painful (also, note to self - figure out why that’s a thing that happens? bc as a premed student, that one is a bit curious). i’m gonna be tired in the morning but honestly, i was gonna be tired regardless, lol. once i feel less dizzy i’m gonna go back to sleeeep because that sounds really lovely rn (i should wait for it to be above 60 or something but i’m just gonna wait till my head stops feeling spinny and that’ll be good enough. precise medical measurements? nahhhhhhhhhhh.) and on that note, i’ll sign off! g’night💕

So there you have it - one week of uncensored low blood sugar thoughts from yours truly!  Stay safe everyone - I'll try to write again soon.  Love y'all!

College!

 Hi y'all!

Ok.  Yeah.  I haven't posted in... 5 months?  Oops.  Sorry about that.  Life happens, ya know?  Let's skip the me-making-excuses part and get to the post.

One of the things that happened during my extended hiatus was that I committed to Yale!  Yay!  I'm so excited that I'll be pursuing my dream field at my dream school.  Of course, T1D adds a lovely layer of extra planning and worrying to any venture, and college is no exception.  So this post will be a glimpse into what it's like getting ready for college while dealing with a chronic condition like T1.

Obviously, in high school, my 504 plan took care of most of the accommodations I needed.  Now, that's not to say that getting that plan was easy, or that all of my teachers respected my needs all the time.  But overall, it was pretty much a one-and-done kind of situation.  In college, it's... not quite that simple.  The fact that our student body is so much bigger than Niles North, combined with the fact that every professor runs their classroom a bit differently, makes it hard to account for all of the possibilities.  I've been working with my endo to come up with a comprehensive list of everything that needs to be considered; using my phone in class for Dex is the biggest one, obviously, but there's also things like rearranging my class schedule to make sure I have time to walk across campus without my blood sugar plummeting, and getting permission to reschedule exams as needed.  In total, I've got a list of more than 10 accommodations that the university is legally required to provide.

Now, all that might sound a bit overwhelming to any non-PWD.  But it's easily overshadowed, at least in my mind, by the biggest issue: for the first time in my life, I'll be living without my parents.

Y'all know I'm seriously thrilled about getting some more independence and having the chance to make my own decisions.  But the fact remains that no matter how frustrating it can be to live at home, I've got two people in the house who know exactly what to do if I have a hypoglycemic episode.  If I feel like I'm going into DKA or feeling sick after a rebound, I can rely on the people around me to know what I need and help me get through it.  And now... now I'm going to be over 800 miles away from home, surrounded by a bunch of people who may not have ever heard of Type 1 Diabetes.

I've never been ashamed of my condition.  Ever.  If you went to elementary or middle school with me, you know that even when I was a kid, I was always happy to answer questions or teach people about what it means to have T1D.  The result of that was that by the time I got to high school, the majority of my friends already knew at least the basics of Type 1.  Sure, I had to explain it to the new friends that I met along the way, but at any given time, I could usually count on at least one person to know what I meant if I said I was high or low.

But there's something about the idea of having to explain T1D to a whole new group of people, that makes me wonder if it would be easier to just... not.  To do my insulin in the bathroom instead of the dining hall, to wear my CGM on my stomach instead of my leg.  But the truth is, that's not an option for me.  Because in the event that I do need help, I won't have my old classmates there to get me what I need.  That's the reality of having a chronic illness: at any given time, your survival could literally depend on the people around you.

So yes, at some point I'll tell my friends about the weird little machine on my leg.  At some point, I'll apologize to my roommate for the inevitable low blood glucose alarms that will wake both of us up during the night.  I'll show my suitemates how to use a Glucagon and tell my professors not to yell at me for eating during class.

And then I'll do college.  Just like anyone else.  It'll be busy and confusing and so, so, so much fun.  I'll learn new things and make new friends and figure out how to store a whole bunch of needles in my dorm room without making it look like I'm doing something illegal. (Ok, so maybe not exactly like everyone else.  But close enough.)

Oh, and to any Yalies who are reading this: Hi!  I'm Abby.  I'm a MCDB/psych major, aspiring surgeon, tennis player, musician, and bookworm.  And I happen to have Type 1 Diabetes, which is probably not as scary as you think it is.  Come chat with me!  You know how to reach me, and I'm always looking for new friends.

Stay safe y'all!  I promise I'll write again soon.  Sending love to all of you!

Vaccines, Society, and the Progress We Haven't Made

 Hi y'all!

Happy new year!  I know it's been ages since I posted.  It's hard to stay motivated during remote learning, ya know?

I was reading the newspaper yesterday and I saw an article about the new COVID-19 vaccine.  Super exciting, right?  I'm so excited to be able to leave my house again.  It's been a loooong year, and everyone in my family is eager to get the vaccine and start returning to normal life.

In Illinois (and most other states), the vaccine is given to people in phases.  According to the article that caught my eye yesterday, phase 1a consists of healthcare workers, phase 1b consists of seniors and essential workers, and 1c is - and I quote - "people with medical conditions that make them high risk, like cancer and diabetes."

So.  Yeah.  Great, right?

Not so fast.  I've been living with T1D for almost 11 years, so I know this drill pretty well.  See, here's the thing - since 95% of diabetes cases are T2D, lots of folks kinda just forget that the rest of us exist.  "Diabetes" becomes synonymous with T2D, and folks with T1 are left to do our own research and figure out whether the topic in question applies to us or not.

Research time!  Flipping over this particular rock reveals a whole mess.  Long story short, because people with T1D are so often forgotten, there's no standard procedure for where we belong in the vaccine phases.  Some states specify that Type 2 Diabetes falls under phase 1c, but don't mention T1 anywhere.  Other states just say "diabetes."  A few just say "high-risk conditions," leaving folks with T1 confused as to whether we count because we don't fall under the usual list of comorbidities, but we're still at a higher risk of COVID complications.

Thanks to pushback from the DOC, a couple states (2, to be exact, plus Washington, DC) have modified their lists to include T1D in phase 1c.  But the rest of us are left in confusion, with very few resources.  Even my endocrinologist doesn't know whether I'll be able to register for 1c or not.

And the worst part is, I'm used to this.  Most of us are.  Every PWD knows the feeling of hearing "this diet prevents diabetes" or "take this medication to get rid of your diabetes."  We've all had people say "oh yeah, my grandma/cat/some random person I met once has diabetes" and then assume they know everything about our condition.  Even TV ads for T2D medication don't always specify that they're only meant for T2... which is why we so often end up hearing people say "You have diabetes?? You should take this pill! I saw it on TV!"

If y'all have been following my blog, you know that T1D and T2D are completely different.  (And if you haven't, I suggest you go check out my other posts, because you're probably pretty confused right now!)  So when people assume they understand our condition just because they have some experience with T2, the results can range from annoying to downright harmful.  Society's consistent refusal to differentiate between the two types results in stigma, reduced quality of care, and - in cases like the vaccine list - potential danger when we're denied access to a lifesaving vaccine for a virus that poses a higher risk for us.

So, bottom line: We have a lot of work left to do.  As long as misconceptions and misinformation about T1D remain commonplace, we will continue to encounter issues like this one.  Folks with T1 are usually happy to answer questions from people willing to learn, but correcting people who confidently preach wrong ideas gets exhausting.  Do your research, please, y'all.  And to all my fellows PWDs - stay safe and stay strong.  Love you all!

Mental Health

 Hey y'all!

Well, this is definitely the longest I've ever gone without posting.  Geez.  I don't really have an excuse, except, like... quarantine?  Life?  I don't even know.  I've been simultaneously busy and bored for the past seven months.  But here I am!

This post is one I've written and rewritten in my head several times.  It's also a topic I've addressed a bit in some of my other posts, because it's inextricably linked to T1D.  Any chronic condition, whether visible or invisible, has a profound effect on mental health, and T1 is no exception.  There are several factors at play here, so let's break them down a little.

*Trigger warning: This post deals with a lot of discussion about mental health issues, including anxiety, depression, and eating disorders.  Take care of yourselves y'all!*

First: The trauma of diagnosis.  This is one that's not discussed often, even within the DOC.  Many PWD are diagnosed at a young age, and most of the time that diagnosis doesn't occur until after they've gone into DKA and their organs are failing.  When I was diagnosed, I spent several days in the ICU, and as a 7-year-old who was terrified of needles and hated being sick (just like most kids), the whole experience was incredibly traumatic.  I still can't walk into Evanston hospital without getting flashbacks.  I still panic every time my brother says he's not feeling well.  That stuff stays with you long after you think you've moved on.

And then there's the whole "living with it" part.  Every single person with T1D knows the feeling of mental exhaustion that so often precedes burnout.  I once heard it described like this: Put your arms straight out in front of you, like you're reaching for something.  Hold that position for as long as you can.  Eventually, you reach a point where you wanna put your arms down, right?  Your muscles are tired; you want to relax.  Now imagine how it would feel if you could never break that position--or maybe you could, but it would have life-threatening consequences.

Ok, maybe not the most sophisticated metaphor.  But the point is, living with a chronic condition like T1D is exhausting, physically and mentally.  From the minute you wake up until the minute you go to bed, you have to make a conscious effort to keep yourself alive, not to mention enduring the physical pain of injections and infusions.  One study done by Stanford University found that people with T1D have to make an average of 180 extra decisions EVERY DAY as a result of their condition.  Yeah, you read that right.  Every day.  No break.  No rest.

As you can imagine, living with this constant stress puts PWD at a significantly higher risk for mental health issues like anxiety and depression.  Not surprising, if you think about it.  We have to make so many decisions every day, and each one could literally be the difference between life and death.  I know it sounds like I'm exaggerating--but y'all know I'm not.  Living with that mindset, never being able to relax, viewing new situations through a lens of danger--it's easy to see how that can lead to anxiety.

And of course, depression and burnout go hand in hand.  For those of y'all who don't know about burnout... it's one of the worst things a PWD can go through, and also one of the most common.  Burnout is the feeling of giving up, the feeling that even though you know you should check your blood sugar or take insulin, you just can't.  You know it's dangerous, you know you'll feel better if you do it, but you just don't care because you're so tired of being sick and tired of needles and stress and all of it.  Every PWD that I've known has faced burnout to some extent, though it's more severe for some than others.

There's also the feeling of being a burden--again, something that pretty much every PWD faces at some point.  Sometimes it happens when you look at your family's medical bills and think about how much you cost them every month.  Sometimes it happens when you can't engage in a social gathering because you're busy treating a hypo or taking insulin.  Sometimes it happens when a friend or partner tells you that they're worried about you, and your first reaction is guilt for hurting them.  That stuff weighs on you.

Anxiety and depression are some of the more common mental health issues faced by PWD, but they're certainly not the only ones.  Some folks with T1D develop a condition called "diabulimia"--a type of eating disorder--in which they deliberately skip insulin doses in order to lose weight.  Why does this happen?  Well, aside from the pressure our society places on young people to look a certain way, there's also the added stigma that comes along with T1D.  When a young adult has a condition that's so often mischaracterized as a "fat person's disease" (there are so many things wrong with this stereotype, btw), they may start to feel self-conscious about their weight.  That, combined with burnout, makes it all too easy for them to develop diabulimia.

So why am I writing about all this?  Well, to educate, I guess.  Y'all know I don't want any sympathy, but it's so important for non-PWD to be educated on this stuff.  T1D is an invisible illness, so we all--myself included--have a tendency to put on a brave face and hide our struggles at times.  Like, I got 2 hours of sleep last night because I was up till 4am with an urgent low and then woke up with another one at 6:30.  For me, that's just a day in the life, ya know?  But I'm sure my teachers and classmates were wondering why I seemed tired or unfocused.  I feel guilty on the days when T1D stops me from being productive or helpful, but there's nothing I can do about it, and a little patience from the folks around me goes such a long way.

And of course, I'm writing this for my amazing T1D family--my Pin Cushions, my Diabuddies, my CC19 delegates.  Whatever that voice in your head is telling you, you are perfect and worthy and not a burden.  And yeah, things will get better.  Trust me.  You're not alone.

CC19--One Year Later

Hey y'all!

One year ago today was the last day of Children's Congress 2019--the last day of the best 3 days of my life.  If y'all have known me for a while, you've most likely read all of my CC19 posts already; if you're new here, hey, go check them out! (Shameless plug? Me? Never.)

It's incredible how different things are right now compared to a year ago.  Over the past few months, I've thought a lot about how grateful I am that CC took place in 2019, because it never would've happened now.  Getting a bunch of immunocompromised kids together to meet with members of Congress?  Ain't no way that would be possible this year.  We're so lucky that we had that opportunity before the whole world shut down.

Looking back at CC19 brings up a lot of memories.  First and foremost--I feel an overwhelming amount of love for all of the friends that I met over those three days.  Kalli, Hannah, Bella, Carly, Claire, Adriana, Jackie, and so many others who I still keep in touch with.  The greatest part of having a condition like T1D is the instant sense of kinship that results from meeting others like us.  I'll never forget that night when a bunch of us walked around the city together--most of our bg levels were out of range, our pumps and CGMs were beeping, and we were having the time of our lives just being with each other.

Y'all remember that first night, when we all introduced ourselves onstage with our name, age, and diagnosis age?  I still haven't forgotten that.  It's a reminder that we're not alone, that even in a time when we all feel even more isolated and vulnerable than usual, there are others like us.  And we are so strong.

That brings me to the other emotion that fills me when I reminisce about my time at CC19: pride.  So much pride.  For the work that we did, for everything that we accomplished, for being brave enough to share our stories with members of Congress and remind them that we matter.  I remain in awe of the strength that every one of our delegates demonstrated that day on the Hill.  We were overheated, sleep-deprived, and scared out of our minds, and somehow we were able to sit down with the most influential people in the country and raise our voices for our cause.  Every single one of us was a superhero that day, and we remain superheroes every day.

I don't know what the future holds for us T1D folks.  I don't know what's gonna happen to the SDA, what's gonna happen to the price of insulin, what's gonna happen to us immunocompromised kids in a society that too often ignores our existence in favor of their own comfort.  But here's what I do know: we're unstoppable.  I learned that a year ago, and I haven't forgotten it.

Someday, when this is all over, I'll meet up with my CC19 family again.  In the meantime, I'm sending so much love to all of you.  Can't wait to watch y'all change the world (again)!