T1D and Guilt

So many emotions accompany living with type 1 diabetes: occasional sadness, some anger, a bit of bitterness, flares of acceptance, and a whole lot of frustration.

But another emotion that comes with it that I recently found myself thinking about (and feeling) is guilt. Not guilt over the fact that I have diabetes, per se – because my diagnosis was out of my control – but guilt over the ways that it affects those around me.

Life with diabetes is so much more than blood sugar checks and insulin injections – it’s also about learning how to navigate emotions like guilt.

I feel guilty for all the times my devices’ alerts and alarms disrupt my partner’s sleep.

I feel guilty for complaining to family and friends about my diabetes because they don’t deserve to be burdened by it.

I feel guilty when I have to leave a social event early because I forgot to bring back-up supplies with me or because I experienced a device failure.

I feel guilty when a high blood sugar makes me lash out at my loved ones…and when a low blood sugar causes them to be worried about me.

This guilt weighs heavy on my shoulders, and when coupled with the guilt I carry around when I have a bad diabetes day or let my emotions about diabetes get to the best of me, it can sometimes feel like I’ll collapse at any second because I’m simply not strong enough to handle it. Of course, I don’t feel crushed by the weight of guilt all the time; in fact, it’s only occasional. But when it does rear its ugly head, it’s not fun, and it makes it that much harder to deal with the day-to-day of diabetes.

The reason why I chose to write this blog post about guilt and diabetes is to bring awareness that living with diabetes is so much more than daily insulin injections and blood sugar checks. It also means coming to terms with the fact that it’ll cause a lot of discomfort, both physically and emotionally – and finding out ways to overcome that discomfort, and the emotions of diabetes (guilt included), is what makes people who live with diabetes absolute warriors in my eyes.

Diabetes is All About Getting Comfortable Being Uncomfortable

“Get comfortable being uncomfortable” is a phrase I first grew familiar with when I developed a more serious workout regimen a few years ago.

My daily exercise usually consists of walking my dog, then spending 30-45 minutes completing a workout video of some sort. While these workouts vary in terms of exercise type, one thing remains consistent among them all…and that is the ferocity of the trainers, who besides showing me proper form and technique, also do their part by shouting motivational phrases as I sweat.

“It doesn’t get easier, you just get stronger!”, “You don’t wish for it, you have to work for it!”, and of course, part of the title of this blog post…”Get comfortable being uncomfortable!”

During a particularly challenging workout, that saying stuck out to me. Suddenly, it was dawning on me that this was an extremely good way of summing up life with diabetes. After all, nobody asks for diabetes to happen to them – it just does, and it’s up to people with diabetes and their care teams (loved ones, healthcare providers, and so forth) to accept it and adapt to it.

Life with diabetes is sort of like walking barefoot on rocks…adapting to and getting comfortable with being uncomfortable.

And let’s be real here: There’s nothing comfortable about diabetes. In fact, there’s a lot of uncomfortable things about it. Constant pokes and prods from sharp needles, interrupted nights of sleep, gadgets that alarm at inopportune and sometimes awkward times…and these are just a few of the things that keep me and other people living with diabetes walking on a tightrope at times.

Despite the often-disagreeable ways of diabetes, it’s important that those of us who live with it find comfort in embracing it for what it is. We can’t change diabetes itself, but we do have the power to change how we perceive life with it. So while diabetes has the ability to make me physically uncomfortable (and frustrated, sad, annoyed, anxious…a whole laundry list of emotions), it’s on me to get comfortable with these feelings and live my best life in spite of them. And like exercise, though it can be an exhausting, challenging, and the very last thing I might want to do sometimes, it’s also something that benefits my body and mind in the moment and in the long run. Why not think about diabetes in the same way, or even move past comfortability with it and into embracing it?

At this point in my diabetes journey, I think I’m mostly there…and therefore happy to say that I am comfortable being uncomfortable.

T1D and “What If?”

For me, my type 1 diabetes, anxiety, and the phrase “what if” go hand-in-hand. Or maybe in this case, it should be sweaty-nervous-palm in sweaty-nervous-palm.

In the past, I’ve written about how I believe there is a direct connection between the way my anxiety manifests itself and my diabetes. There’s no denying that the two are related. But another thing that ties the two together in a neat, worried package are these two simple words…”what” and “if”.

Of course, those two words are often followed by a series of other words that turns everything into a full question that is born from my anxiety. The questions all follow the same formula: What if X, Y, or Z happens? Questioning whether something will or will not happen will inevitably trigger me to convince myself that a less-than-desirable scenario will occur, leading me to slowly spiral as I ponder how I can possibly handle said less-than-desirable scenario.

Not following me here? I’ll give you an example. Take my incident last week when I mistakenly gave myself 10x more insulin than I intended to take (10 units versus 1 unit). When I was processing the gravity of that mistake, I asked myself, “What if I’d given myself 100 units? What if I’d been alone when all this happened?”, causing me to think about how much more dire that situation would’ve been and sending chills down my spine. It’s not fun to go down a path like that, yet for much of my life I’ve forced myself to face many “what if” scenarios that have never even happened because my anxiety lead me to that line of thinking.

After 24 years of T1D, though, and living all of my years with anxiety paralyzing me every now and then, I’m trying harder to challenge the “what ifs” and stop allowing them to rule my life, not just my perception of my diabetes.

“What if…”

I guess this is my public declaration, or vow, or affirmation, or whatever you’d like to call it that I want to be better about knocking those “what ifs” out of my way when I feel as though T1D or my anxiety are limiting me. I’m hoping to stop thinking about diabetes as a condition in which I’m held back by “what if” scenarios or one that aggravates my anxiety; instead, I want to have it be more autonomous and separate it from the negative thinking that all too often interferes with my everyday life. I’m just tired of thinking about diabetes with a “worst-case” mindset, so what if…what if I take back control of the “what if” and say “what if I have a really great diabetes day today? or “what if I know more about managing diabetes than I previously thought I did?”

Changing the overall tone of those what ifs sounds like hard work, but it also sounds like worthwhile work. So I’m challenging myself to do it, stick to it, and think…what if I could change how I feel about my diabetes and anxiety, and grow to love them for how they’ve made me stronger, more independent, and brave?

What if, indeed.

My Take on Diabetes and Support

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.

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.

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.

A Human Garbage Disposal

Sometimes, I feel like I am a human garbage disposal.

It’s not everyday, but there are occasions in which I want to eat anything and everything within arm’s reach like it’s the last meal or snack that I’ll consume for days. When I’m experiencing a low blood sugar, I’m especially likely to inhale food as if I’m a living Hoover vacuum…or as I’ve come to think of it, a human garbage disposal.

There’s no doubt about it: Diabetes has totally screwed up my relationship with food. I’ve written about this previously. I’m also just as sure of the fact that my relationship with food has gotten worse as I’ve grown older, a phenomenon that I blame on numerous factors such as the natural process of aging, social media, and society’s constant scrutiny of how women’s bodies “should” look. Add my diabetes into this mix and I feel like trash about my body and harvest negative feelings towards food (despite also loving food).

I definitely blame my diabetes for ruining my relationship with food.

So yeah, a human garbage disposal – with diabetes, no less – feels like an accurate way to describe me and my relationship with food.

Don’t get me wrong – this isn’t a “pity me” post. Not at all. This post is more so me…trying to understand what can be done to repair my relationship with food. Because I think if I can repair it, then I can start seeing positive outcomes on my blood sugar and start to strengthen my own sense of self-love. These are important things, you know, and I’ve hit a point where I’m just tired of feeling so damn negative about my diabetes, food, and my body all the time.

I might feel like a human garbage disposal lately, but “human” is at the forefront of that phrase. I’m human, I make mistakes, and my relationships with my diabetes, my food, and my body are bound to ebb and flow over the years.

At the end of the day, I think it’s just a matter of making peace with that.

Highs Won’t Ruin My Happy

High blood sugar isn’t fun.

When I experience it for prolonged periods of time (say, 2+ hours), I’m far from a happy camper. I anxiously check my Dexcom every 5 minutes until I see my blood sugar start to come back down to range. I gulp down glass after glass of water. I stack insulin (only sometimes). And I will even march or dance around in place as a means of getting my number to come down faster.

Needless to say, my mood tends to be pretty foul when I have a high blood sugar…

…except on the occasions when I refuse to let it steal my happiness.

One such event recently occurred. I was away for the weekend to attend a wedding that I was so dang excited to go to. I couldn’t wait to get all dolled up and spend some quality time with my partner and his friends. It was the first large event that I was going to since the pandemic began, and I admit there were some nerves despite being fully vaccinated. However, I felt better knowing that 1) everything was taking place outdoors, 2) I was surrounded by other like-minded individuals, and 3) I would still be taking extra precautions (e.g., using copious amounts of hand sanitizer all weekend long) to make sure that I was protecting myself and others, too.

I just wanted to have fun without worrying about the what-ifs…delta or diabetes be damned.

High blood sugar was no match for me and my happiness bubble.

And I just wanted to live in what I’ve since dubbed my “happiness bubble”, otherwise known as my own personal la-la land, in which everything is lovely and safe and none of the world’s many issues can penetrate.

An ignorant and naive place? Yes, for sure, but one that allowed me to embrace everything about the weekend:

It allowed me to enjoy every bit of food and drink all weekend long, even though it caused crazy high blood sugars.

It allowed me to forget about my diabetes for awhile and just soak up the company of others and the (truly beautiful) environment that I was experiencing.

It allowed me to feel bliss that I hadn’t really felt since before the pandemic.

Sure, it’s not sustainable to live this way all the time, and it definitely is not an effective diabetes management tactic. However, it was beyond worth it, just for a weekend, to live in my happiness bubble that high blood sugars or diabetes couldn’t ruin, no matter how hard they tried.

Vacation Time

This time last year, I was headed to the beach for a week and wrote a post expressing my excitement over the change of scenery…and the fact that the CWD FFL conference was taking place, albeit virtually, during the same span of time.

I was beyond stoked to get away for a week, my enthusiasm no doubt fueled by having spent the last few months in isolation (with my parents) due to the pandemic. But I was also incredibly anxious seeing as I didn’t know how drastically this vacation would differ from the ones we’ve taken in years past because of COVID concerns. I wrote:

I have no idea if my family and I will be able to even go to the same strip of sand and ocean without having to worry about things like too many people and not enough masks. We probably won’t be able to eat at many restaurants like we typically do on vacation; instead, we’ll likely cook a significantly higher percentage of our food at home. And we definitely won’t be able to peruse the shops like we have done every year since going to this particular beach town – we’ll have to be a little more creative when it comes to staying entertained.

Granted, I also wrote in that blog post that I was grateful to have the FFL conference to “attend” as a distraction that was both one that I wanted but also one that might be necessary so I wasn’t completely without fun things to do over vacation.

The beach I’m heading to may not look exactly like this but that doesn’t make me any less excited for vacation.

What a relief it is to think about how much things have changed between now and then. Thank goodness for vaccines!

This is my long, roundabout way of saying that I’m on vacation all of next week and I’m so excited to have all that time to unplug and unwind. As much as I liked attending the FFL conference virtually last year, it didn’t foster that sense of community and joy as much as it does when I’m attending it in-person. I’m thrilled for the individuals who are able to go in-person this year, though – I know they’ll get so much out of it and have a truly fun time.

But for now, it’s time for me to hit the recharge button. I’ll still have a couple of new blog posts up and ready next week so be sure to come back then to check them out!

T1D and “Inspired” Food Choices

There’s no doubt that T1D directly affects my relationship with food.

Sometimes, I eat whatever I want with zero guilt. Other times, I painstakingly count not just the carbs, but every single macro of any morsel that meets my mouth. And more often than not, I fall somewhere between those two extremes.

But no matter what, my relationship with food is exhausting and probably one of the most inconsistent relationships I’ve ever had in my entire life.

It’s also a relationship that causes me to make what I’m calling “inspired” food choices.

Diabetes certainly impacts my food choices…especially when it comes to blood-sugar spikers like pizza, pasta, waffles, cake, and more.

Choices like eating dessert before dinner because my blood sugar is low.

Choices like only eating low- or no-carb foods because my blood sugar is high.

Choices like timing my meals down to the minute because I know that my body functions best when I eat regularly.

Choices like keeping snacks in my purse, my overnight bags, my car, and miscellaneous other locations because I never know when I might need food on the fly.

Choices like restricting my eating because a low blood sugar made me binge on food one day, and the guilt carried over to the next day.

Maybe “inspired” isn’t the right word to describe my food choices here. There’s so many more that could apply: weird, strategic, healthy, unhealthy…the list is limitless.

Just like the number of “inspired” food choices that my diabetes triggers.

Good, bad, and everything in between, though, the first step in making changes to my relationship with food is acknowledging the flaws in it. While I admit that I’m not sure what the next step is, I do know that I’m feeling determined to finally establish a guilt-free relationship with food.

Diabetes already takes too much from me…I refuse to let it continue to make my relationship with food negative.

Diabetes and the Blame Game: Time to Stop Playing It

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.

The blame game can cause a whole lot more harm than good in the life of a person with diabetes.

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.

What to Do When a Loved One with Diabetes is Struggling

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?

Emotional support is incredibly important when it comes to helping a loved one with diabetes get through a difficult time.

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.