Diabetes is dumb. We constantly have to manage it, even if it's background noise to the rest of our life. Carb counting, insulin dosing, predicting how our BGL will respond when you do X, Y or Z... the list goes on. And it can be incredibly overwhelming, to both the diabetic and those who get involved with us. Our BGL affects our moods and often mirrors the behaviour of a slightly belligerent drunk. But beyond the highs and lows, there's the mental fatigue that goes along with this disease. We'll get to that later.
The truth of the matter is there are very few situations where you can say something about diabetes management to a diabetic without getting your head ripped off. We love you, we know you're trying to help and have our best interests at heart. But when we're low/high, we are not always rational.
With the help of that one dude brave enough to marry me, as well as random diabetics from the internet and real life, allow me to share some pointers on how to talk to the diabetic in your life.
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"Sometimes shit needs to be said, and you just have to be willing to be a punching/stabbing bag and wait a couple days for an apology that might never come." - my husband
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The Lows
Low diabetics are cranky, often unreasonable assholes. The only "acceptable" thing to say to a hypo diabetic (according to us) is nothing. Fine, you can push food on us, pester us until the low has been treated, but after that... stfu. Just realise that nothing you say will be taken in the manner it was intended.
Acceptable things to say (but you'll still get yelled at):
"You should eat some sugar."
"Have you treated yourself?"
(silence)
The Highs
When our sugars are high, we often feel like garbage (headaches, nauseous, etc). It can take time to feel normal after our sugars start to drop, and honestly, it's a horrible feeling when you've been high for a prolonged period of time. We feel icky, lethargic, and sick.
Acceptable things to say:
"Have you taken a correction?" (risky, this is pro-level diabetic spouse)
"Do you want me to go away?"
"Here's some water."
Other general stuff that should be said and may or may not result in getting yelled at, as evidenced by that one dude who puts up with my nonsense:
"I'm sorry you feel like crap. Let me know if you need anything." - my husband
"You haven't moved and I heard your CGM alarm... are you okay?" - also my husband
"Did you bring low food for our run?" - still my husband
"I'm going to go into the other room." - my husband when I'm low/high and being psycho. He's pretty smart.
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The Mental
I get a bit worked up about the lack of emphasis on the psychological side-effects of diabetes during diagnosis and routine visits. It's not uncommon for diabetics to experience some level of depression, and the pressure to keep your BGLs within a tight range and have a good a1c (basically a representation of your average BGL over 3 months) can result in burnout. It doesn't help that control is a moving target, and how your body responds to carbs and insulin changes as you age, have lifestyle changes, move to a different climate, get stressed... the list is never-ending. Hell, seasonal allergies affect my insulin resistance, and if that isn't the dumbest thing ever I don't know what is.
My point is, you can figure out what works and be good for years, and then suddenly and for no apparent reason it stops working. I've encountered this recently with coffee - I've never taken insulin for it (and I drink a lot of coffee), but over the last month or so my sugars have skyrocketed when I drink it, even if I'm still fasting. So, after 15 plus years of caffeine never being an issue, I now have to bolus for my coffee. And boy, does that feel wrong.
When we're feeling overwhelmed and like nothing we do is working, it's all too easy to spiral into a vicious loop of self-loathing and fatigue. I've heard many diabetics express the desire to just say "fuck it" and not bother with trying to control their diabetes because it feels unattainable and pointless. There's even a name for this malcontent - diabetic distress, with symptoms including fatigue, depression, anxiety, and stress.
This disease sucks. There's pressure to have numbers that may or may not be reasonable depending on the individual's lifestyle and where they're at. The focus on meeting a target number may work for some, but can also result in people obsessing and not living their lives because they're afraid of being out of range. I hear too many diabetics talk about how their medical provider emphasises their a1c and ignores their concerns about exercise or stress or insulin ratios. Numbers only tell part of the story, and it's exhausting trying to keep tight control when it feels like your world is burning down around you.
And when you feel powerless to control your body and your disease, it's incredibly hard to care.
To my fellow diabetics who are struggling, please, please take this to heart:
It gets better. Maybe not today. Maybe not tomorrow. But it will get better. You don't have to have perfect blood sugars; our bodies kicked perfect to the curb and anyway, perfect is the enemy of good. It's okay to be high or low sometimes. It's okay to treat yourself to a donut or piece of cake or candy or whatever food or drink you're supposed to stay away from because this disease really messes with your diet and how we view food. It's okay to have off days. It's okay to feel overwhelmed. It's okay to talk to someone about your struggles, be it a shrink or a fellow diabetic or your loved ones. You are not alone.
To the brave souls who love us, please don't trivialise what we deal with every day. Don't brush aside the complaint about how our sugars are all over the place and it's frustrating as hell. The flippant "you'll get over it" is a painful thing to be on the receiving end of. If we trust you enough to vent about our disease, please realise how hard that can be and be supportive. Validate our feelings, because we often shove them down and ignore them, let them fester until we start sliding into frustration and anger and depression.
Acceptable things to say:
"I'm sorry you're struggling. Let me know if there's anything I can do."
"It's okay if you're not perfect. You deserve to live your life."
"I have faith that you'll figure this out."
"I love you anyway."
If you want a bit more reading about the psychological component of diabetes, here are some good articles:
Mental Health America discussion on Diabetic Distress (this one is really good and I highly recommend it)
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Finally, I have collected some gems from people who think they know stuff about diabetes. It's hilarious after the fact and occasionally aggravating during. I hope you enjoy this taste of idiocy and unintentional humour.
Unsolicited (and idiotic) advice told to real life diabetics:
"Eat a lot of broccoli and your diabetes will go away." - idiot talking to a type 1 diabetic
"You're diabetic, you can't eat sugar." - idiot talking to a diabetic treating a hypo
"If you live a healthier life, you wouldn't have diabetes." - jackass who apparently wants to get punched
"You can't be diabetic." - armchair expert
"Take a tablespoon of apple cider vinegar and honey every morning. That will cure you." - Type 2 diabetic teacher to a Type 1 student
"God can cure your diabetes." - science denier
"I heard cinnamon can cure diabetes." - internet dummies
"Stop taking insulin, it makes you sick." - someone who doesn't understand how the human body works
