A woman enrolled in the self-defense class that I took this month approached me, remarking on our shared condition, with a knowing look on her face. She glanced down at my pod, which I had marked with red duct tape to signal to others that this area of my body couldn’t engage in some of the movements that we’d be asked to do.
I smiled widely at her and we launched into a brief, but friendly and supportive conversation about diabetes in which we covered everything from devices to years lived with diabetes. We spoke for a few minutes before we wished one another well and parted ways.
Diabetes in the wild encounters are always interesting because they either spark instant camaraderie or, on the complete flipside, a flurry of ignorant questions/comments that prove to me just how much diabetes stigma is still alive.
Encounters like this one, fortunately, fall in the former category.
It’s just nice to know sometimes that I’m not alone, even in the most random of circumstances. That I don’t have to explain myself, or the nature of my fragile pod, to a person who actually understands why it needed to be protected. That I have someone who totally gets why I was in a panic the week before when I didn’t have a functioning CGM or my meter as a back-up when my blood sugar went low.
It’s a form of support that might not last more than 5 minutes or so, but still has a meaningful impact on me and my diabetes.
My 24th diaversary shall be known as…the one I almost forgot.
My diaversary, which falls on Christmas Eve, has never been something that I actually actively celebrate because I’m always too busy celebrating the holiday season with my family. And that’s exactly what happened this year: I was living in the gift of Christmas present (there’s a pun in there, I know) rather than reflecting on that fateful one 24 years ago.
It feels fitting, really, that I didn’t remember my diaversary until a couple weeks after it came and went, because this Christmas Eve was extra special in a different way. It was the first significant holiday since the pandemic hit that my entire family could be together. And I mean my entire family – I saw both my mothers’ side and my fathers’ side, and even my big brother was able to come home from Nashville for the week. So I was spending the holidays really rejoicing in the fact that we were all able to safely see one another for the first time since Christmas 2019, rather than dwelling on my diabetes diagnosis.
After all, it’s the people who surround me that make something like diabetes manageable. My supporters – family, friends, partner, dogs – are the ones who motivate me when I’m experiencing diabetes burnout. They’re the ones who let me cry on their shoulders when diabetes is too much. They’re the ones who high-five every diabetes triumph that I experience. They’re the ones who remind me that my life is not defined by diabetes (despite how much I talk about it). So with that in mind, I can get behind doing what I did this diaversary: celebrating them instead of my diabetes for every Christmas Eve to come.
I wrote a version of this post on November 20, 2019. I wanted to revise it and share it today because, as we approach a week in which we recognize gratitude for our loved ones, I want to express how grateful I am for the people in my life right now who support me throughout the highs, lows, and everything in between that comes with life with diabetes.
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.
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.
And now, two years after I wrote this original post and two years of life experience later, I’ve finally fostered my perfect support network from the different people and relationships in my life. I’ve got the lifelong support of my family members, the years of support that my friend groups have provided to me, support from coworkers who work with me in the diabetes space (bringing a whole new meaning to people who really and truly “get it”), and the support in my romantic relationship that I’ve been missing my entire adult life. It feels incredible to have a partner who always asks questions and demonstrates a willingness to learn about my diabetes, adds new perspective and helps me identify solutions when I’m being challenged by my diabetes, and shows up for me when I really need him to. That, and the support I get from the other groups I’ve mentioned, is truly powerful…and when it’s combined with learning how to rely on others and best support myself, support becomes magical and absolutely enhances the quality of my life with diabetes.
This post originally appeared on Hugging the Cactus on June 13, 2018. I’m sharing it again today because the blame game is played far too often in life with diabetes. People pass judgment on others for how they choose to manage diabetes, and it does more harm than good. Read on for my thoughts on why we need to stop shaming others.
Here’s a little disclaimer: This post is highly personal. I’m going to dive deep here and talk about a few things that bother me when it comes to how others perceive T1D. My opinions are strong, but I’m entitled to them – just like you are.
“I can’t believe his blood sugar got that low. He really needs to have better control over his diabetes.”
“Why wasn’t she carrying a snack with her? That’s so irresponsible, she should know better!”
“They’re unhealthy. The way they manage their diabetes isn’t okay and it’s no wonder they go to the doctor so much.”
These are words that others have spoken about people with diabetes in my presence. While these thoughts and feelings aren’t necessarily about me, it doesn’t mean that I don’t take them personally.
Why do they bother me? Because they’re dripping with judgment.
It’s easy for someone who simply doesn’t understand diabetes to make assumptions based on a couple of observations they make about someone with diabetes. But just because it’s easy to assume things, it doesn’t make it okay.
Just because you see someone have a tough diabetes day, it doesn’t mean that’s what it’s like all the time.
Just because someone forgot to carry a low blood sugar remedy on them, it doesn’t mean that they always forget one.
Just because you know of someone who frequently visits the doctor, it doesn’t mean their diabetes is “out of control.”
Just because you blame someone for not taking “proper care” of themselves, it doesn’t mean that they don’t try their damnedest.
That’s what’s so wrong about making assumptions about how someone manages his/her/their diabetes: It’s impossible for anyone to know the full story about that individual’s diabetes, because they are the one solely in charge of it. They know how it behaves 24/7/365. They know it better than their doctor, spouse, family, friends, and coworkers. And the funny (and by funny, I mean really shitty) thing about diabetes is that sometimes, you can’t predict what it’s going to do next. So you have to be prepared to roll with the punches at a moment’s notice. And you’ve got to be that prepared all the damn time: when you’re awake, asleep, traveling, exercising, working, and just plain living.
Sounds exhausting, doesn’t it?
So that’s why I think the blame game is especially cruel when it’s played to cast judgment on people with diabetes. We have the incredibly difficult task of taking care of something that most other people never have to worry about, and blaming someone for not “doing what they should be doing” is heartless and does nothing to help them.
I challenge anyone reading this to think twice before they jump to conclusions about how a person with diabetes takes care of themselves. Remember that just because you may have witnessed them going through a difficult diabetes experience, it doesn’t mean that it’s like that for them all the time, or that they aren’t doing everything they can to take the best possible care of themselves. The world is occupied by enough critics – do your part to be supportive, not shameful.
This blog post was originally published on Hugging the Cactus on March 20, 2019. I’m sharing it again today because as tough as diabetes can be for me, it can be even harder on my loved ones who can’t do anything about it – especially when diabetes struggles turn into emotional struggles. Read on for my opinion on how you can help your loved one with diabetes overcome difficulties.
If you have a partner/spouse, relative, or friend with type one diabetes, it can be difficult to know how to best support that person when they’re experiencing struggles related to diabetes. You might try to offer a shoulder for your loved one to lean on, but that might not always work. Your loved one might push you away or continue to internalize their issues. It can create turbulence in your relationship with one another, and it’s frustrating all around.
So what can you do?
As someone who both has T1D and loves others with T1D (my mom, my aunt, many good friends), I believe that the best way to react is to just listen. Whenever I’ve faced serious struggles or emotional turmoil due to diabetes, nothing has helped me quite like a person who spares time for me to listen to me. Whether I just need to spew out an angry diatribe (LOL at the pun), cry about my problems, talk through issues, or seek advice, it’s worked wonders on me to know that I have individuals in my life who are willing to listen to me. Let me emphasize the listen part once again – listen, not tell me that I’m right or wrong, or offer advice (unless I specifically ask for it).
I get it; sometimes, it’s easier said than done to just listen. A few people I know are so determined to help me fix the problem that they can’t help but react emotionally along with me when I’m dealing with diabetes drama. But trust me, that usually heightens (rather than alleviates) the tension.
It’s all about teamwork. Give and take is involved. Often, enormous amounts of patience are required. Sometimes, it takes awhile for the struggles to subside. But one thing that is certain is that your loved one with diabetes will always thank you and be grateful for your support in their time of need. It’ll strengthen your relationship as well as function as proof that diabetes can’t break your bond, no matter how hard it might try.
Scroll through Facebook, Instagram, or any other social network and 99% of what you see is the idea of “perfection”: Beautifully dressed and made-up individuals showcasing their gorgeous homes or families or possessions. Usually, some sort of caption will accompany the post and it might say something like “so blessed to do life with my dream partner” or “we just bought our first home, can’t wait to fill it with joyous memories” or some other gushing, effusive language that is followed by a series of exclamation points and emojis.
There’s nothing wrong with this…except for the fact that, obviously, people’s lives aren’t as “perfect” as they seem.
Life is messy, but we don’t get to see that side for many people on social media.
This is true not just about life events, but something as specific as life with diabetes.
I think that our community has gotten a lot better about it, but I used to see so many posts that showed “perfect” blood sugar graphs and “perfect” A1c readings.
And I used to obsess over these posts.
I’d wonder why I wasn’t achieving the same levels of success as these other individuals. I’d convince myself there was something wrong with me, and that I’d never have blood sugar graphs or A1c levels that were “good enough” to share online.
Between diabetes perfectionism and real-life perfectionism (Why aren’t I married yet? When will it be my turn to start a family? What’s wrong with me that I haven’t met all the other adult goals that so many of my friends have met?), I was starting to drive myself insane.
Social media was breeding a culture of comparison for me.
I couldn’t log onto an account without immediately comparing myself to the images I saw and the stories they told.
So how did I start to unsubscribe to that culture of comparison?
For starters, I came to terms with the fact that I didn’t want to leave social media altogether. I like how it keeps me connected with family and friends on top of connecting me with individuals all around the world. I like how it functions as a support system when I need to consult my diabetes online community for wisdom and guidance.
But I knew that I needed to take a step back. So I started slowly and gradually: I removed the Twitter and Facebook apps from my phone, telling myself that if I really wanted to check the feeds for either, I could do so using my Internet browser. I also spent less and less time scrolling, a habit that was addicting to me because I wanted to see as much content as possible, but also one that I recognized as damaging because more content meant more comparisons to others.
The most important thing that I did, though (and continue to try to do) is repeat a few mantras to myself:
This is just one page of this person’s story.
You don’t know the whole picture.
You don’t want to be anyone other than yourself because you truly do love the people and things in your own life.
It might sound silly, but reminding myself that social media is designed to show off the “best” parts of our lives really did help me come to terms with the fact that I needed to stop comparing myself to everyone. Just like I have plenty of bad things that happen in my life, I have a hell of a lot more good, and just because I don’t choose to showcase everything on my feed doesn’t mitigate the good.
And one last thing that I’m trying to do? I’m simply trying to be happy for others who revel in their successes and choose to share them online. I’m also trying to pay closer attention to those who are brave enough to showcase their failures online, diabetes-related or not. In fact, it’s not uncommon for me to open up my Instagram app, scroll through my feed, and see the most “perfect”, straight-lined Dexcom graph followed by an “imperfect” topsy-turvy Dexcom graph. I’m training myself to react to the former graph not by comparing myself, but by feeling good for the person who posted it. And in terms of the latter graph, I also don’t want to compare myself to it (I’m not proud of it, but I’ve taken a look at “bad” graphs before and said OMG, my numbers are sooo much better), but instead offer words of encouragement or commiseration – because we’ve all been there.
The comparison culture is toxic. It’s taken time for me to realize just how much it was affecting me, but now that I have, I’m glad because removing myself from it will help enrich the relationships I have online and in real life. When it comes to diabetes specifically, it’s difficult enough managing my own, and that much harder when I compare how I take care of it to how other people with diabetes live their lives. Learning to appreciate our diabetes differences instead of stressing over them makes it so much easier to support and uplift one another when we need it most.
This time last year, I was under the impression that I’d be heading to the Friends for Life Orlando conference that is held each July.
It was supposed to be my “triumphant return” to in-real-life diabetes meet-ups. There were so many individuals I’d hoped to either reunite with or meet for the first time.
Obviously, the pandemic totally changed my plans – as well as everyone else’s.
I was upset for awhile, but took consolation in the fact that the FFL team worked hard to turn it into a virtual conference. IMHO, I think they did an excellent job, and I remember signing off from that one feeling hopeful to attend it in-person in 2021…
…except I just don’t think that’s going to happen for me this year.
As far as I’m aware, the CWD FFL Orlando conference is on and in-person for 2021. But I, personally, am not comfortable attending. I know this won’t be the case for everyone and that’s okay. Yet I still feel compelled to explain why I’m not going to attend and how this makes me feel.
I don’t feel good about traveling, well, anywhere these days. I have a lot of anxiety about it, so much that any type of getaway, as nice as it sounds right now, just wouldn’t be worth it in the end because of how much worry I’d have about the trip.
And of course I’m sad about this. Of course I want to escape somewhere, and OF COURSE I’d love the chance to see my diabetes community in person. I find that in-person interactions are so much richer and fill me with a sense of gratitude and camaraderie that just can’t be matched online. Plus, I feel that it’s much easier to forge genuine connections when interacting with others face-to-face…I struggle to keep up with all the tweets, Instagram posts/stories, and Facebook threads, so instead of trying to weed my way through them all, I typically just don’t engage whatsoever. I simply can’t find enough time to comment as much as I’d like, which means that I miss out on some great opportunities to satisfy my need for conversation with the diabetes community.
As much as my decision not to attend bums me out, I do take some solace in knowing that there are others in the same boat as me. And I also feel reassured thinking about how hopefully, this time next year, I will be planning my true comeback to the wonderful world of diabetes conferences (in the wonderful world of Walt Disney, to boot).
You know how in Spongebob Squarepants, title cards are held up every so often in episodes to depict the passage of time?
Imagine me holding one up now and saying in the Spongebob narrator voice: “500 Blog Posts Later”…
I can’t believe I’ve hit 500 blog posts published on Hugging the Cactus…all in the span of a little more than 3 years.
Most of these posts I’ve written and posted here exclusively. A couple posts have appeared on sites like Beyond Type 1. A dozen or so posts I’ve shared twice because I either especially liked them or wanted to revisit something I’d written years ago. And a handful more posts were written by others for organizations like T1International and shared here because of their powerful messages.
I’m quite proud of this 500 post milestone and want to give credit…not to myself for it, but to you, and to the other writers and individuals who have helped me get this far.
Without YOU reading my posts and commenting, my desire to keep sharing and writing would wane.
Without other writers and individuals, I’d lack inspiration and perspective that are key to keeping this blog as interesting as possible.
Support means the world to me when it comes to managing diabetes, and as it turns out, when it comes to managing this blog, too. So thank you for yours.
I hope you continue to come back to read the next 500+ blog posts.
Merry Christmas! I am taking today off from writing a longer blog post, but I wanted to be sure to 1) wish you and yours well during this holiday season and 2) remind you to take it easy this holiday. It’s no secret that just about everything about 2020 wasn’t great and certainly far from ideal…making it more important than ever to take a step back from everyday hectic life and take a moment to appreciate all your blessings, big and small. If you are spending the holidays alone or have trouble finding the joy in this time of year, know that you are not alone and be kind to yourself. Tell all the special people in your life that they are loved and you will instantly find yourself embracing the spirit of the season.
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.
#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.