Tag: chronic illness

The Language of Diabetes: Is it a “Chronic Illness”, a “Disease”, or a “Condition”?

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What would you say if someone asked you to identify diabetes as one of the following: 1) a chronic illness, 2) a disease, or 3) a condition?

My response would be…it’s not so clear-cut for me. It’d change depending on how I felt about my diabetes at a given moment in time.

What word(s) would you use to identify diabetes?

So for example, on the days when diabetes dominates all of my thoughts and emotions with its unrelenting nature, I’d be more inclined to call it a chronic illness. On those occasions, my diabetes seems determined to remind me that it’s not going anywhere, and that I’d better just accept that it’s here to stay.

But when diabetes is straight-up pissing me off – say because of a medical device failure or a stubborn high blood sugar that won’t come down – I’d call it a disease. It seems to be a fitting title for something that’s acting in a disordered nature, and goodness knows it infuriates me to no end when the elements of diabetes that I can more usually control act out unpredictably.

And then it’s when diabetes and I are just mutually co-existing. I’m aware of it, and it’s aware of me, but it doesn’t have the ability to impact my emotions like it does when it’s behaving more like a chronic illness or a disease. When diabetes is my condition, I have it – it doesn’t have me.

I could be reaching a bit here with my musings on associating diabetes with different words, but truly, language is powerful in diabetes (and really, in all aspects of life). Words and phrases have connotations and significance depending on the contexts in which they’re used, making their endless combinations utterly fascinating. Because of this, I believe that examining the specific language around diabetes is extremely interesting as I think about the ways I describe my own diabetes experience and how that involves my emotions.

And what’s really cool is that there’s no right or wrong way about the words I choose to use regularly around my diabetes because it’s my story to tell. Here’s a friendly reminder that the same applies to you, too.

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My 23rd Diaversary

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My 23rd “diaversary” (anniversary commemorating the date that I was diagnosed with diabetes) is tomorrow. Yes, that also happens to be Christmas Eve.

I was four years old when I was diagnosed with diabetes…so I don’t remember life without it. I’m not the type of person who gets overly emotional when sharing her diagnosis story because it’s just a foggy memory to me. So what is the significance of my diaversary to me?

It’s two-sided:

On the one hand, my diaversary is the day that my life changed forever, that I had something taken away from me, that I lost a “normal” childhood.

But on the other hand, it’s representative of the day that I was given something that gave me strength, independence, and courage unlike anything else in my life has ever given me.

I choose to focus on that latter part.

I’m not exactly grateful for diabetes itself, but I can’t deny that it has given me some very valuable things.

I don’t want to mourn the day that I was diagnosed with a chronic condition, I want to celebrate…and the fact that it coincides with Christmas Eve, a day that’s very special to me and so many others, is sort of beautifully poetic.

So rather than dwell on 23 years’ worth of insulin injections, fingerstick pokes, doctor appointments, and carb counting, I’m going to think about how all of those things have molded me into the person I am today: A person who has refused to let diabetes get in her way of the things she wants in life.

“You’re Being Too Paranoid”

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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.

It’s Not Always Diabetes’ Fault

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“OMG, it sounds like you have super brittle bones. What’s up with that? Is it because of your diabetes?”

I sighed into the phone, grateful that the telehealth professional couldn’t see my annoyed facial expression.

“Oh no, it’s nothing like that. I’m just clumsy!” I tried to keep my tone light and threw in a little laugh for good measure. She went on to say something about how I might want to consider taking calcium and/or vitamin D supplements, but while she went off on her tangent, my mind wandered.

What does bone health have to do with diabetes? And why does it seem like everyone assumes that all of my health issues are directly related to my diabetes?

it's not always diabetes' fault
When it comes to blaming diabetes for other conditions, some people have their heads in the clouds…

Truthfully, it’s a safe assumption – the vast majority of the time, anyways – that my diabetes does have some sort of influence over the rest of my health. Plenty of studies indicate that comorbidity is common with type 1 diabetes (in other words, other conditions are diagnosed alongside the primary condition, in this case, diabetes).

But is my diabetes the cause for my seasonal asthma? Is it the reason I’m allergic to cats and dogs? Did my diabetes create the digestive issues I’ve faced since childhood? I don’t know, maybe. There could be a tenuous connection there.

On the flip-side, is my diabetes responsible for my (almost always) excellent blood pressure? Does it have anything to do with my slight arrhythmia? It’s not as clear-cut in those areas; in fact, I’d be hard-pressed to find a real cause-and-effect relationship when it comes to those things.

So do I blame my diabetes for “brittle bones”? Heck no. I blame my breaks in the last couple of years purely on myself and my tendency to rush around in an uncoordinated manner. And on top of that, based on how quickly I healed from my last break, I expect my recovery to go as well this time around, and I doubt that’d be the case if I genuinely had brittle bones.

This time around, it’s not my diabetes’ fault, that much is clear. And it’s also pretty obvious that I need to exercise a little more patience with health professionals who 1) don’t know me well and 2) are just trying to help me improve my overall health.

It’s a gentle reminder to be a touch more graceful in how I move…and how I respond to innocent queries about my diabetes and other health conditions.

COVID-19, Chronic Conditions, and…Telecommuting?

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First, let me apologize for adding to what seems like a never-ending cycle of news and media about COVID-19, a.k.a. the coronavirus. But I wanted to write this post because a friend of mine works for a company that sent out a communication about it that I found…interesting, to say the least.

The email in question was about the company’s current coronavirus protocol. The following is an excerpt from the email, provided by my friend:

If you have or live with someone who has a medical condition that the WHO has highlighted as being at higher risk for complications from the virus (elderly, immunocompromised state, chronic conditions such as diabetes, chronic lung disease, and cardiovascular disease), you are strongly urged to work from home if possible with your job function. If you cannot work from home, please consult with your manager.

So…the wording of this email struck me as a little odd for a few reasons. If I worked for this company, I’d wonder: 1) Just because I have one of the named chronic conditions, does this mean I must seriously reconsider my present working environment even though nobody in my office travels internationally? 2) What exactly does “strongly urged” mean, anyways? and 3) What is a manager expected to do if someone cannot work from home, for whatever reason? Make up their own set of rules? Force someone to come in or not come in? And if the latter is the case…would a paycheck have to be forfeited?

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I’m absolutely amazed that I managed to find a stock image that wasn’t terrifying for this particular blog post and topic…

As I pondered the answers to these questions, I also started to think that there was a chance I was overreacting to the wording of the email. So I asked other friends how they felt about it and they reacted the same way I did. Everyone was generally confused by the message that this was saying (or not saying) about people living with chronic conditions and how they should handle a situation like this.

Plus, I can’t shake the feeling that emails like this just add to all the hype/panic that we’re already being inundated with, and if I were to receive something like this, it certainly wouldn’t do anything to ease my normally-anxious mind. It’s getting more and more challenging to tune it all out…

…but on the bright side, at least I know how to properly wash my hands and sneeze/cough into my elbow. So I’ll continue those common-sense practices every day, and when I’m doing my own work, I’ll be glad it’s from the comfort of my own cubicle.

7 Questions People Always Ask Me About Type 1 Diabetes

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This blog post was originally published on March 2, 2019 at Hugging the Cactus. I’m reposting it now because…these seven questions are timeless.

Human beings are naturally curious creatures. So it’s never really surprised me when, upon discovering my T1D, people tend to ask me boatloads of questions about what it’s like. And it’s definitely not at all shocking that many of these questions are recurring.

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Here’s a list of seven questions that I’m almost always asked when I encounter someone who’s just learning about my diabetes. You’ll notice a trend as you read, because even though there’s “no such thing” as a stupid question, this list kinda gets dumber as it goes on. There, you’ve been warned…

7. What does it mean when your blood sugar is high/low?
This is definitely a fair question. I never expect someone who is unfamiliar with diabetes to know the meaning of hypoglycemia or hyperglycemia. I actually kind of appreciate being asked this question, because it helps me spread awareness. The more people that know how to react in severe high or low blood sugar cases, the better, IMHO.

6. Why do you wear all of those devices?
Another decent question – I never mind explaining how my CGM and my pump work, but I do mind when people say ignorant things, like “Oh, are those patches to help you quit smoking?” *Eye roll*

5. Can you eat/drink [fill-in-the-blank]?
Ugh…I get why people ask me this, but it’s a little more tiring to explain. My answer is usually along the lines of: “I can eat or drink whatever I like, but I need to take insulin to account for it. So I try to eat a limited amount of carbs at a time, because that means I have to take less insulin, and there’s less room for error.” But even after that easy-to-understand explanation, the typical follow-up questions are “BUT CAN YOU EAT CAKE/COOKIES/ICE CREAM/ANY SUGARY FOOD?!” And that’s when I lose a bit of my patience, TBH.

4. Does it hurt when you check your blood sugar/give yourself a shot?
I mean, no? I’m not trying to be facetious or anything, but really, after 21+ years of checking blood sugar and giving myself insulin multiple times per day…there’d be a real issue if it hurt every single time. I concede that there are the occasional sites that sting, but it’s not nearly as bad as many people seem to assume.

3. What’s that beeping sound/ARE YOU GOING TO EXPLODE?!
Honestly…use common sense. What’s the likelier scenario here: That my devices have built-in alarms, or that I’m going to spontaneously combust?

2. How did you get diabetes/WHAT DID YOU DO WRONG?
This. is. such. an. ignorant. question. Nobody, myself included, did anything “wrong” that resulted in my diabetes diagnosis. I didn’t catch it and no number of lifestyle changes could have prevented me from developing diabetes. My immune system merely decided to attack and destroy the insulin-producing beta cells that lived in my pancreas. There’s no real answer as to how diabetes is caused, though genetics likely play a role in it. Don’t worry, you won’t “catch” the ‘betes by being in my presence.

1. Do you have the…bad kind of diabetes?
This question is THE WORST of them all because there is no good kind of diabetes! Gestational, type 2, LADA…none of them are favorable. They all suck. They all require constant care, regulatory medications, and endocrinology expertise. So please for the love of all that is sacred and holy, next time you hear someone ask this question, gently inform them that there’s no such thing as good/bad diabetes.

 

It’s Not Called Cryabetes

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C’mon, Molly. Get it together. It’s not called cryabetes. I stared at myself in the bathroom mirror, giving myself an internal pep talk to keep the tears from flowing down my cheeks. I felt a little uneasy on my feet, so holding a steady gaze proved to be challenging after a few moments.

Why was I on the verge of an emotional breakdown? It was all my blood sugar’s fault, of course. For about an hour, I’d been hovering in the upper 60s to lower 70s. There are far worse blood sugar ranges to fall in, but I’d been feeling the classic symptoms of a low for that entire span of time – and it was really testing my fortitude.

My self-talk was fruitless; within seconds, the first few tears escaped from my eyes. It wasn’t long before a couple tears turned into full-fledged bawling. Alarmed by my outburst, my boyfriend tried to calm me down (he was aware of my low blood sugar situation) and attempted to use humor to get the crying to stop. Very quickly, he discovered I was a bit beyond that and that it was best to just let me be sad.

I was sad because I was tired and wanted to go to bed but it didn’t feel safe for me to sleep just yet. Safe to sleep. Can you imagine not feeling safe enough to fall asleep, even in your own bed surrounded by your own blankets in your own room, with your partner nearby?

So the tears came and went because, even though I tried my damnedest, I still felt so out of control in this situation. Not knowing how long it would take my blood sugar to come back up to a level that I felt safe to sleep at, not knowing what exactly caused this predicament in the first place, and not being capable of being mentally stronger than my diabetes all in that moment in time got to the best of me.

Definitely very chronically UN-chill of me, right?

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So sure, diabetes isn’t called cryabetes. But that doesn’t mean my emotional lapse – or any emotional lapses related to diabetes – wasn’t warranted. Crying can be healing, and in this moment in time, it was the only thing, oddly enough, that could make me feel a tiny bit better.

Learning to be Chronically Chill

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I’m not sure that I’ll ever fully be at peace with my diabetes.

I have days when I hate it a little less, sure. I even have days when it doesn’t bother me at all. But true acceptance of my diabetes? I used to think I had it…not anymore. In 22 years, there’s just been too many times that I’ve detested every aspect about life with diabetes: the painful shots/needles, the constant planning, the many doctors appointments, the countless hours of sleep lost, the amount of money that goes into caring for it…the list could go on and on.

I know, I know…this all sounds extremely negative. It’s a little unlike me. But let me tell you what, instead of forcing myself to unequivocally accept my diabetes, I’m learning how to be what I’ll call “chronically chill” with it. It’s a bit of a play on words, you see. Diabetes is considered a chronic illness (I prefer to think of it as a condition; to me, “illness” has an ickier connotation). By definition, the word chronic means long-standing or permanent, and I’ll always have diabetes. So it’s about time that I start to be chronically chill – persistently cool, relentlessly alright-fine-I-get-it-you’re-not-going-away-any-time-soon – with my diabetes.

Learning to be Chronically Chill
Me, being my chronically chillest, on the beach.

To me, this is different than accepting it. Others might disagree, which is totally fine, but I think that accepting diabetes means hugging it warmly, with open arms. I don’t want to do that. Rather, I want to get to a place where I can be just…fine with my diabetes. Just let it coexist with me. I never want it to get to the best of me, but I also don’t want it to think that it can stay with me forever. I guess it’s the optimist in me that still thinks a cure is right around the corner.

How am I going about this process of being chronically chill? I’m taking it a day at a time. I’m trying to not get bogged down so much by the small things. I’m trying (and this is super mega hard for someone like me) to come to terms with the fact that I can’t have control over everything in my life. I’m trying to focus more on things like time in range versus my A1c. I’m trying all of this at once, and I believe that it will help me achieve the chronically chill status I’ve described.

And if the process goes more slowly than I want it to, I’ll just refer to the above photo of me on the beach from time to time…because it’s hard to find a place where I’m more chill – my most serene self – than when I’m near the sand and surf.

Sugar and T1D: Friends, Not Foes

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For someone who doesn’t eat sugar…. you sure do know how to bake….damn those were good

My coworker sent this to me via instant message as a way of thanking me for the cupcakes I’d brought into the office that morning. Before 11 A.M., a dozen and a half or so “butterbeer” flavored cupcakes I’d created were devoured by my coworkers, who gave rave reviews on their taste, much to the delight of this wannabe pastry chef.

This particular message of praise, though, made me simultaneously smile and cringe: It was that comment, again. The one about sugar and not being able to eat it.

Everyone in my office knows that I have type 1 diabetes. And because I make it my mission to spread awareness of how to react in certain situations that a T1D might encounter, most people I work with know that in cases of low blood sugar, fast-acting carbohydrates (i.e., sugar) are essential as they’re the fastest way to fix a low.

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Sugar saves my life from time to time…and no, that’s not an exaggeration.

But every now and then, I’m reminded that no, people don’t always remember what you tell them about diabetes. It goes to show that there’s always room for more advocacy…which is why I write about diabetes and won’t stop talking about it to those who want to know more.

As a result, I’m constantly telling people that I can and do eat sugar; in fact, it saves my life from time to time. Maybe that’s the subconscious reason why I love baking cupcakes, cookies, and more: For a girl who relies on sugar sometimes, I sure do know that a baked good every now and then is what helps me stay alive.

And the Nominee is…Me?!

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Friends, I am pleased to share that I have been nominated for a WEGO Health Award. My blogging for Hugging the Cactus has qualified me to be a Patient Leader nominee for the “Best Kept Secret” award, which is very exciting to me! What’s more, if I advance to the finals round, I may be able to win a trip to Las Vegas for the HLTH conference in October. This would provide me the opportunity to be around other Patient Leaders who, I’m confident, I could learn so much from, as well as the rare chance to attend a health-focused conference based on merit rather than cost.

What exactly are the WEGO Health Awards? They were created to recognize and honor those who strive to make a difference in the online health community. In the past few days, I’ve scrolled through the growing list of nominees who are advocates for all sorts of conditions, from anemia to ulcerative colitis. It’s quite eye-opening to see just how many health topics inspire individuals to spread awareness via social media, blogs, podcasts, YouTube channels, and more. And it truly is an honor to be listed among these incredibly inspiring nominees.

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Well, this is just plain cool.

If you feel that I deserve to move on to the semi-finalist round, please follow this link to endorse my nomination. By clicking the link, you can view the other nominees and their profiles, which I strongly encourage so you can find out for yourself the sheer volume of skilled storytellers out there. Plus, you never know, you might just discover someone who you can relate to or who inspires you. After all, in a world of chronic conditions that can feel so isolating, isn’t it always a comfort to find out that you’re not alone?