5 Tips for Navigating T1D and Friendships

Diabetes can interfere with so many aspects of daily life…including friendships and relationships with others.

I’m an extremely fortunate person: I’ve never had my diabetes be a “deal-breaker” for a friendship or a relationship. I’ve never had much difficulty in explaining it to others or receiving support from friends when I’ve needed it. Of course, the level of support that I get from people in my life with T1D is much different compared to the support I get from people in my life without it, but both types of support are invaluable.

Recently, I had an Instagram follower ask me for my advice on how to help friends understand T1D: what it’s like and what’s appropriate to do/say to a person with diabetes. She expressed her frustration with a friend who doesn’t seem to understand that just because she has diabetes it doesn’t mean that she can’t enjoy sugary treats from time to time. So in response to her anecdote, I decided to round up my five best tips on how to navigate T1D and friendships/relationships in which there’s a lack of understanding and a little too much judgment.

Some of my favorite conversations about diabetes with my friends have taken place on a comfy couch with a good glass of wine, making this a great photo for this post.

#1: Be open, honest, and willing to answer questions. In almost two-and-a-half decades of life with diabetes, I’ve learned that this is the most important thing I can do when meeting new people and forging friendships/relationships. It’s not like my diabetes is the very first thing I say to people (“Hi, I’m Molly and I have diabetes” sounds like a South Park gag)…but it is something that I make sure to casually cover early on in the relationship. Opening the door to communication about diabetes from the get-go seems to have helped me avoid tricky situations in which I have to spend too much time correcting misunderstandings about life with diabetes and not enough time on fostering my connection with an individual.

#2: Show all aspects of life with T1D. My philosophy is to never hide any part of my diabetes from friends. I let them watch me when I do fingerstick checks, site changes, and more. I involve them when I need help correcting a low blood sugar or need to take a moment to do a bolus calculation. I’ve found that this really helps my friends feel included and they tend to show more interest and genuine curiosity when I do my “diabetes stuff” around them. It creates natural learning experiences for my friends and they get to see firsthand just how much work it can be to take care of my diabetes.

#3: Tag along to endocrinologist appointments. I understand that this might not be possible right now in this “new normal”, but in the past, I’ve had my significant other come with me to endocrinology appointments. The most memorable experience was seeing a diabetes educator with my significant other so I could be retrained on how to use an emergency glucagon kit, and so he could learn for the first time. It was really eye-opening for my partner, and ever since then, I’ve encouraged others to invite their loved ones or the person/people they live with to attend appointments every now and then. And hey, since so many doctors’ visits are virtual these days, maybe it’ll be even easier for more people to tag along to these appointments than before.

#4: Make an introduction to the DOC. Some of my friends are more social media savvy than others, so for those who have shown interest, I’ve introduced them to the diabetes online community on Instagram. There are sooooo many profiles there ALONE – forget Facebook/Twitter/other diabetes blogs – that do an incredible job of shedding light on the significant and mundane (and everything in between) parts about daily life with diabetes. These accounts have helped them truly get diabetes in a way they hadn’t previously and I think it’s made my friendships stronger, healthier, and judgment-free.

#5: Correct misconceptions – gently. Even my closest friends, or the ones with the best of intentions, have slipped up now and then and said something to my face that is simply not true about diabetes. And that’s okay, they’re not perfect (and they certainly know that I am not). When this happens, I use it as a teaching opportunity and let them know why what they said is wrong or factually incorrect. I find that the gentle, patient approach helps to reinforce whatever it is that I’m telling them, so at the end of the day, it’s a win-win for all parties.

“You’re Being Too Paranoid”

They didn’t say that to me, but they didn’t have to…it was written in bold all over their faces.

Recently, I dined outside with people who are close to me (I’m not going into specifics as to who exactly they were to maintain some level of discretion). I was explaining to them that come the winter season, I probably won’t be dining out much out of COVID concerns.

I wish people would spend less time judging others and more time taking the proper precautions to help protect themselves and their loved ones.

I’m just not ready to dine indoors yet. In fact, since March, I’ve only set foot into a physical store, dwelling, or other establishment a dozen times. For me, the risk associated with spending time inside when it’s completely avoidable just isn’t worth it.

But what sucks about this is the judgment I receive from others. Just like I did in this scenario, the looks on their faces make me feel like I have to defend myself. I wanted to scream at them, “you try having a chronic illness and dealing with it during a global pandemic!”…but of course, I’d never do such a thing, and I’m very glad that they don’t have to worry about that.

I do wish, though, that they – as well as other people who are quick to judge individuals like me who are scared and overly cautious these days – would use a little more grace and humility when conversing with those of us who are high risk.

Please try to put yourself in my shoes.

Please understand that not only am I considered high risk, but I’m in direct contact with loved ones who are also considered high risk.

Please know that, yes, I do have a desire – a very strong one – to get back out there and do “normal” things.

But think about the things holding me back…a chronic condition that requires a lot of my time and energy, for starters.

And think about how there are millions of other people like me who share this great responsibility for an underlying health condition that they didn’t ask for on top of a great fear.

I hope it changes your perspective.

Don’t Feel Sorry About My Diabetes

This blog post was originally published on December 17, 2018 at Hugging the Cactus. I decided to repost it today because this is something that will ALWAYS be relevant – in fact, someone just said to me earlier this month that they are sorry I have diabetes! I wish people would stop apologizing for something that nobody can change, and something I accepted long ago…read on for more about why I never want people to feel sorry for me because I have diabetes.

Today’s blog post is going to be short and sweet, and about a subject that I think every person with diabetes deals with whenever they tell someone new about their diabetes.

It doesn’t matter how diabetes comes up in conversation. Whether it’s in a joking, serious, educational, happy, sad, or angry manner, the person I’m talking to almost always says…

“I’m sorry.”

I’m not sorry that I have diabetes, so you shouldn’t be, either.

Sometimes, I think it’s because society has instilled this weird reflex in people to apologize for something that they didn’t do. Other times, I think it’s because people just don’t know how else to respond to something that may be sobering or grounded in reality. But the simple fact of the matter is…

People need to stop apologizing to me, and other people with diabetes, for having it.

Here’s why:

  1. It doesn’t make sense.
  2. We weren’t given a choice – it’s a simple truth that we’ve learned to accept.
  3. It makes me feel strange, because it’s almost like the other person is taking accountability for my diabetes.
  4. I believe that human beings apologize too much, in general, and it diminishes apologies when they matter most or are most sincere.
  5. I’m not sorry that I have diabetes, so why should someone else be?

While I genuinely empathize with and appreciate people who apologize as a knee-jerk response, I’m just here to gently tell them that it isn’t necessary. Save “I’m sorry” for times that it’s warranted, and not for something like having diabetes, a matter in which no one has a choice.

Full Disclosure: I Have Diabetes

“Full disclosure: I have diabetes, so I have to be extra careful and wear a mask and gloves.”

“Full disclosure: I have diabetes and it can be tricky for me to handle it when I’m drinking alcohol.”

“Full disclosure: I have diabetes but I love baking treats using regular sugar instead of sugar substitute.

“Full disclosure” – what is it about this phrase that has made me utilize it several times when meeting new people in the last couple of months?

The term itself means to reveal the complete, factual truth to an individual or individuals regarding a particular matter. But why have I associated it with my diabetes? Why has it become a conversation crutch for me in which I rely on it to introduce my diabetes?

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Hey, Cactus Huggers…did you know that I have…DIABETES?!

I guess that’s because I’m trying to let the person or people that I’m talking with know that my diabetes is something that I feel I have to reveal to them in my own time. I want others to know that a lot of the time, my diabetes makes my decisions for me, particularly in cases that my blood sugar might be directly affected because I did or did not do something.

I also depend on the phrase as a bit of a segue – it transitions the topic of conversation to diabetes for at least a couple of minutes as I answer any questions that someone might have for me about it. It’s casual enough to reassure the other person that it’s no big deal, but it’s also a contextual clue that I’m about to disclose an important tidbit of information about myself.

I’ve always been interested in the language of diabetes – the words and terminology that are innately part of this chronic condition – and I’m well aware of the power of using certain words over others (e.g., I try to use “person with diabetes” instead of “diabetic” because it’s important to separate an individual from the condition). So I’m adding “full disclosure” to my personal diabetes dictionary because of my realization that it’s become a mechanism for me in conversation that I can use to smoothly introduce my diabetes.

I’m a word nerd for a reason, cactus huggers.

Remembering My Grandpa

Six years and one day ago, my maternal grandfather passed away. He was 87 years old and lived a very full life, but his passing felt sudden to all of his family members who simply believed that we had more time with him.

In the immediate days following his death, my parents, brother, aunts, uncles, and cousins experienced a wide array of emotions, as well as physical side effects from overwhelming grief. I had some of the highest blood sugars of my life during this time, and I also came down with some sort of fever that left me boiling hot one minute and head-to-toe shivering the next.

I remember that getting myself ready for his wake was a real process – I was collapsed on the floor just outside of the bathroom, waving a hair dryer not just on my head, but also all over my body because I felt so frigidly cold. Little did I know, my blood sugar was also well over 400, but even if I’d known that fact sooner, I probably wouldn’t have cared very much.

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A photo from my Grandpa’s last birthday with us.

Anyways, the intent of this post isn’t to remember a truly heart-wrenching period of my life. It’s to help me remember my grandpa, and catch him up on everything that’s happened since he left us. I thought it’d be most appropriate to do this in the form of a letter.

Dear Grandpa,

I have so much to tell you. But let me start with an apology. I’m sorry that I didn’t appreciate you more when I was younger. I’m sorry that I didn’t try harder to talk to you and hear your many stories firsthand. I always respected you throughout my youth and teenage years, as my parents instilled upon me early on to respect my elders. And even in childhood, I knew you were the elder to respect; after all, I was convinced that you single-handedly ended WWII. What’s more respectful than that? Anyways, I digress – the point is that I wish I made more of an effort to learn more from you and I’m sorry that I’ll never get a chance to make up for that.

You probably already know most of what I’m going to tell you. We lost Zuzu the same year we lost you, and I’m sure she’s with you in heaven now, but then we gained Clarence a couple of years ago and I think you would get such a kick out of him. There’s been a few more losses in our family, too, but many more gains of all kinds, and I know that in a way, you were there with us for those occasions and everything in between.

You also probably already know that since we lost you, I graduated college and started my career. Weird, right? I also started a blog about diabetes, and really, it’s become a much bigger part of my life than it ever was before. I would love to see your eyes widen in awe at our diabetes technology and how advanced it has become over the years. (I remember how amazed you used to be when we showed you our computers and early-model eBook tablets, I can only imagine your reaction to medical technology!)

As I sit here and type this and marvel at how much (and how little) has changed since you left, I remain grateful for the fact that you were a big part of our childhoods (“our” meaning my brother’s and my cousins’ childhoods, as well as mine). I also take comfort in the fact that just because you’re not physically here to witness all of this stuff, you’re here in our hearts and you’re with us in that manner for every step in our journeys. I know that when I’m having a tough diabetes day, you’re one of the guardian angels looking out for me and helping me recover from it.

And I also know that you’d be proud of me for what I’ve accomplished so far in life, and for me, that’s more than enough motivation to keep going, fighting, and working hard to beat diabetes and be successful in other arenas, too.

Love,

Molly

Why Meeting a New Endocrinologist is Scarier Than Going on a First Date

I have an appointment with my endocrinologist today. Or should I say, the person who I hope is my new endocrinologist. I really want this patient-doctor relationship to work out!

It’s my first new endocrinologist in about ten years and I am effing nervous. It’s comparable to going out on a first date with someone, only I’m not hoping to be wooed with flowers or treated to a fancy meal.

I’m hoping that this person is someone I can trust with my health…which I value a lot more than any of the associated costs of a first date.

Why Meeting a New Endocrinologist is Scarier Than Going on a First Date
There are higher stakes with a new endocrinologist than with a new dating-app match.

Why is this new doctor terrifying to me? For starters, I have so many questions. What if she doesn’t like me? What if I don’t like her? What if she judges me? What if she’s too lenient? What if…? The list goes on and on.

Plus, I’m seeing her after smack dab in the middle of holiday celebrations, also known as the most turbulent time of the year for me and my blood sugars. I’ve had so many highs in the last month that I’ve tried to stay on top of, but she’s bound to notice them and ask me if this is a regular thing for me. It’s also pretty likely that my weight has gone up as a result of the many indulgences I’ve enjoyed in the last few weeks, and I’m worried about whether comments will be made on that.

Not to mention that I haven’t seen an endocrinologist since…late August, I think? And that appointment was with my “old” doctor, who left to practice somewhere far, far away. It was a bittersweet parting, and it wasn’t on amicable terms because neither of us was ready for it to be over. So I’m heading into a new potential endocrinologist relationship with that in my mind, and my new doctor has a lot to live up to when compared with my old doctor.

I just want everything to go well. I know that if it’s not a perfect fit, it’ll be pretty evident straightaway, and I can seek another new endocrinologist. But to continue with the dating metaphor, it’s not as easy as just swiping along and seeing what other nearby options I have. There are other concerns beyond location: I need to make sure my doctor can accept my insurance, on top of them being likable, knowledgable, and eager to help me manage my diabetes. It might be surprising to learn that this particular combination is a tall order, but again, when it comes to my health I refuse to just settle.

Fingers crossed, it’s a match from the start and all of my concerns will be rendered invalid late this afternoon at the conclusion of my appointment…

 

My Take on Diabetes and Support

It’s November 20th which means that it’s Day 20 of the Happy Diabetic Challenge! Today’s prompt is “biggest supporter”. Since it’s impossible for me to identify a single person as the biggest source of support with my diabetes, I decided to write about how my thoughts on diabetes and support have changed over the years.

Emotional support is a lovely thing. It feels good to have people in your life who you feel have your back. And it’s twice as nice to have when you’re dealing with a chronic illness like diabetes.

I talk extensively about diabetes and support in the most recent episode of the podcast, Ask Me About My Type 1. (Here’s the link in case you haven’t listened to it yet.) Rather than rehash everything I said in that episode, I’m going to use this post as an opportunity to reflect how my wants and needs in terms of support for my diabetes have changed over the years.

It’s interesting (at least, it is to me) to think about how and why my desire for support has changed as I’ve grown older. My childhood was very normal despite diabetes. It was always there and it was always a thing I had to deal with, but I definitely didn’t feel compelled to talk about it as much as I do now, let alone lean on others in difficult times. Why is that?

I think it has a lot to do with getting to know myself better as I’ve aged.

HUGGING THE CACTUS - A T1D BLOG
In this post, I get all self-reflective-y on diabetes and support.

After all, they say that with age comes wisdom. And though I don’t exactly consider myself a wise old sage or anything of the sort, I do think that I’ve acquired some enlightenment about myself and the way that I process things in my adulthood.

Specifically, I realized in the last few years that diabetes has instilled in me a strong desire to feel in control of every aspect of my life…not just diabetes. When something doesn’t go according to whatever carefully thought-out plan I’ve cooked up, I get upset. And I tend to either bottle up my dismay, which is never a good thing to do, or I totally take it out on the whichever poor soul happens to be within my vicinity, which isn’t fair. Neither of those reactions is a healthy method of dealing with things, but at least I’m aware of that and I’m actively trying to improve how I cope.

I think that this example shows how important diabetes support has become to me because I’m able to lean on others in those times that all of my diabetes plans don’t work out the way I envisioned them. I’ve figured out, over time, that it’s just about the only thing that really works for me. Talking to other people with diabetes (and without diabetes) about struggles that I’ve faced makes me feel less alone. It used to be scary for me to be so vulnerable with others, but I’ve found that it’s worth it because it helps me heal, move on, and forgive/accept myself for feeling whatever I’m feeling.

Support from others is truly powerful…but above that, learning to rely on others – learning how to best support myself, really – is more than that. It’s magical and absolutely enhances the quality of my life with diabetes.

My Diabetes Hero

It’s November 6th which means that it’s Day 6 of the Happy Diabetic Challenge! Today’s prompt asks us to name our diabetes hero/heroine. Well, I have more than one…

My diabetes hero is not just one person. It’s a small group of people that I call my family. (Awwwww, how sweet.)

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Me with my heroic diabetes family.

My mom, dad, and brother are all-too familiar with diabetes. My mom is T1D, like me, and my dad and my brother were the lucky ducks who got to live under the same roof as us for many years. All three of them are diabetes heroes to me, but in some very different ways.

Let’s start with my brother. He is three years older than me and I’d say we were fairly close to one another in our shared childhood. Though he doesn’t share a diabetes diagnosis with me, he grew up with diabetes just as much as I did. And do you know what’s amazing about that? I’ve never once heard him complain about it. If he has ever felt any fear or worry for my mom and I, he definitely has done a good job of internalizing it. He treats us like we have normal, functioning pancreases, and I think the reason for that is he knows that we are more than capable of taking care of our diabetes ourselves. Although his thoughts and feelings about our diabetes have yet to be verbalized, I appreciate his unique brand of support for us and I continue to be wowed that he never seemed to be bothered by the extra attention I got as a child due to my diabetes. No unhealthy sibling rivalry there!

Next up is the other Type None in our family: my dad. I’ve written about my dad in a couple of previous blog posts. He is truly the Mr. Fix It in our family. If there is a problem, he wants to solve it – especially if it is something that is causing his loved ones emotional distress. He has had more than his fair share of situations in which my mom or I were seriously struggling with our diabetes. I can only imagine how he feels when all he can do is just stand by and let us work through our issues: It’s probably a combination of helpless, angry, and worried. He’s said numerous times over the years that he’d give my mom and I his healthy pancreas if he could, and I’ve never questioned the sincerity behind that sentiment. I know he means it, and to me, that’s the kind of heroism that nobody else in my life can even begin to compete with.

And then we’ve got my diabetes partner-in-crime, my mom. How on earth she managed to deal with her OWN diabetes, in addition to mine, all throughout my childhood is completely beyond me. Besides being there for me as a source of unwavering emotional support as someone who really “gets it”, my mom’s attended practically every single endocrinology appointment with me, encouraged me to start using an insulin pump, ordered alllllll of my supplies for many years (and kept track of the stacks of associated paperwork), and helped keep me as calm as humanly possible throughout my terrifying insurance transition that took place late this past spring. Let me just restate that she did all of this and still does all of this while still dealing with her own diabetes!!!!! It’s sort of mind-blowing to me that she can stay so much calmer about her diabetes than I ever could when it comes to either of ours, but she does it, and that makes her a heck of a diabetes hero to me.

What’s really neat about my diabetes heroes, as a collective unit, is that diabetes has never and will never define our family. It’s something that lingers there in the background, for sure, but it almost never steals our attention away from our time spent together. I can’t recall a single instance in the last 22 years that diabetes really, truly disrupted our family rhythm (maybe my parents would disagree with that and count in my diabetes diagnosis, but I barely remember that).

It just goes to show that even as something as life-altering and disruptive as diabetes only made my family stronger when it hit us with a double dose.

Overcoming Fears and Feeling All the Feels at FFL Falls Church 2019

I wasn’t sure what I was doing here.

“Here” meaning the CWD Friends for Life conference that took place in Falls Church, Virginia, this past weekend. CWD/FFL are acronyms synonymous with some of the largest, best-known conferences for people with diabetes and their families. I went to my first in Orlando back in 2013, and it resulted in me craving more chances to spend time with large groups of T1Ds.

However, timing and money prevented me from going to as many conferences as I’d like in the last few years. I did go to one back in 2017, but it wasn’t what I’d hoped it would be…so going into FFL Falls Church 2019, I was simultaneously excited and nervous.

My fears and anxieties hit their peak within minutes of me arriving to the hotel that was hosting the conference.

All around me, I was witnessing mini reunions taking place. It seemed like everyone in attendance knew each other, and the introvert within me was totally freaking out – how could I possibly join these preformed friendships?

I left that first night feeling a little deflated. I’d only managed to speak to a couple of people who weren’t exhibiting vendors, and I’d spent entirely too much time looking busy on my cell phone when in reality I was just hoping someone might come up and talk to me. It was a little pathetic, but I knew I’d go back the next day having learned from my mistakes.

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Wearing the signature neon green bracelet (which denotes that I have T1D to other conference attendees – the other bracelet color is orange and that means you do not have T1D).

Day 2 rolled around and as I moved from session to session, I slowly started coming out my shell. I met and spoke with parents of T1D children of all ages. I heard a wide variety of diagnosis stories and experiences. I forced myself out of my comfort zone even more by attending a session that focused on diabetes and complications, which I normally can’t stand thinking about, but I actually found it to be one of the best sessions of the entire conference. It’s amazing how much people can open up to a room of what started out as strangers but quickly turned into friends and confidants.

By the third and final day of the conference, my diabetes soul was feeling rejuvenated. It’s pretty difficult to put into words, but being surrounded by so many people with T1D (and those who care for them) for a full weekend is unlike anything else. You’re around people who understand everything about diabetes. They know what a low blood sugar feels like. They know that 4 beeps emitting from an OmniPod is no big deal because it’s just a 4-hour expiration alert. They know how to carb count better than most doctors. They know what burnout is.

It’s just really magical.

In the end, I’m incredibly glad I went to the conference. I met people I might not have ever had the chance to meet. I learned quite a bit about some new diabetes technologies and medicines (more to come on those later). I had open and honest conversations about nearly every aspect of diabetes, which made me feel less alone. I left feeling happy, better informed, more connected, and most of all, proud of myself for overcoming my fears and attending the conference on my own.

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My happy face at the end of the conference.

 

Dealing with Diabetes When You’re the Maid of Honor

No, no, no. Not today diabetes. Dammit.

The morning of my cousin’s wedding, I woke up to a blood sugar of 237 after a night of fighting elevated levels. There was no rhyme or reason for the high blood sugar – I hadn’t eaten a single thing for 16 hours at that point, but I had changed my pod an hour or two before going to bed.

Why You Should Get a Flu Shot (If You Haven't Gotten One Already) (2)
When you’re the MOH and you also happen to have diabetes, you worry about a lot more than just your speech or your makeup.

WTF was wrong? Was the pod’s cannula bent? Was I high due to wedding day jitters? Would the highs persist all day?

These were the thoughts racing through my mind almost as soon as I woke up the morning of my cousin’s wedding.

I didn’t have time to worry about my MOH speech, or whether my hair would turn out the way I wanted to, or even to drink a celebratory mimosa while I got ready with the rest of the bridal party – I was too preoccupied by my elevated blood sugar.

All I could bother to think about was a potential solution before we all walked down the aisle.

Somewhere between applying my eyeshadow and having the 111th bobby pin secured in my hair (yes, it truly took 111 bobby pins to make my intricate braided up-do possible), I remembered “The Incident” from last year. I’d slept through a high blood sugar that, the following morning, refused to come down. As my frustration grew, so did the pain in my belly that lead me to the bathroom, where I came very close to passing out. One ambulance trip and ER visit later, I discovered that my pod’s cannula was bent, leaving me with no doubt that a pod malfunction was responsible for the whole ordeal.

With that memory vividly replaying in my mind, I made the executive decision to change my pod a couple hours before we were due at the wedding venue. And I can’t even begin to explain how happy I am that I listened to my intuition to do so. Upon removing it, I noticed blood at the site – not as bad of a sign as a bent cannula is, but a possible indicator of a problem. By the time we were in the venue’s bridal suite, my blood sugar was sitting pretty at 90 and I was finally able to focus on the beautiful, meaningful afternoon.

Sure, it was a stressful morning and far from an ideal situation, but I am extremely proud of myself for how I handled it. I didn’t panic the way I normally do. I didn’t shed any anxiety tears. I kept the issue pretty well-concealed from the bride, who shouldn’t have to worry about her MOH’s health on her special day. My calm approach paid off, and though it sucked to waste almost two days’ worth of insulin when I disposed the wonky pod, I knew I should pay closer attention to the fact that I did what needed to be done.

And even better was that my diabetes mostly cooperated with me the rest of the day. It didn’t stop me from delivering a fantastic speech with the matron of honor. It didn’t prevent me from enjoying some tasty wedding food, cake and all. It certainly didn’t keep me from tearing up the dance floor with my enthusiastic family. And it didn’t end my night early as I went out with my boyfriend, the newlyweds, and the matron of honor and her husband to a bar to shoot some pool and continue our celebrations.

Turns out that dealing with diabetes when you’re the maid of honor has a lot to do with keeping a cool head and living in the moment, two things that are so important to do in a variety of situations.