We had a family dinner recently. Aunts, uncles, grandparents, cousins… you get the idea. After the kids had gone to bed, the adults started chatting. Someone brought up the topic of my son and his T1D. We mentioned that he’d been having a hard time coping lately. As we explained that he is getting increasingly frustrated by his diabetes, someone decided to say, “Well, I’d just tell him to get over it.”
Get Over It?!
I was stunned. I had no response to that. Where to even begin?
Even if you’re new to the T1D life, you’ve probably encountered something similar. Someone who thinks you’re complaining about nothing, making mountains out of molehills.
People don’t understand type 1 diabetes. They think it’s no big deal, that it’ll become stable, and that insulin is basically a cure.
I didn’t know what to say at the time… Now I have a lot to say.
So, to everyone who thinks people with T1D should “just get over it”, I have some things to tell you.
T1D
Type 1 diabetes is not very common. T1D only makes up about 5-10% of everyone living with diabetes. Most people with diabetes have type 2.
So, that’s what people talk about.
It’s what the commercials are about. And the pamphlets in doctor’s offices. It’s what your friend’s grandma’s neighbor has.
But that’s not the one I’m talking about.
Type 1 is an autoimmune disease. The immune system mistakenly attacked the insulin-producing islet cells in the pancreas and the person’s body can no longer make its own insulin. It’s a lifelong disease. It has no known cause or cure, and it’s NOT easy.
Injections and insulin
If you have type 1 diabetes, you have to inject insulin to stay alive.
This is accomplished either by multiple daily injections (MDI) or via an insulin pump.
If it’s MDI, that means at least 4 injections every day. Often it can be more like 10-12 depending on what you’re eating, when you’re eating, and how your blood sugar is doing between eating.
Even with a pump, you still have to administer insulin multiple times a day and insert the cannula under your skin every 2-3 days.
And the best part? Insulin doesn’t have a standard dosage. That’s not a thing.
You have to calculate your insulin dose every time you need insulin. That is based on what you’re eating: how many carbohydrates are in it, how much fat is in it, how much protein is in it, and what your ICR (insulin to carb ratio) is for that time of day.
Then there’s your IOB (insulin on board, that’s any insulin that is currently active in your system), your activity level, and your ISF (insulin sensitivity factor) if your blood sugar is out of range.
Want to learn more about how that equation works? Dig out your high school math textbooks and follow along with the article below… And we said we wouldn’t need to use math word problems in real life!
Related: T1D Math: The Mealtime Equation
Finger pokes and blood sugar levels
Every time you want to eat anything, you have to check your blood sugar. Want to grab an apple? Check your blood sugar. Latte? Blood sugar. Sandwich? Blood sugar. Want a handful of chips at that party? … you get it.
If you only had to check your blood sugar when you were going to eat, that would be one thing. But no…
You also have to check your blood sugar if you’re going to be active. Too high, activity can make it worse and land you in the hospital. Too low, activity could make you pass out or have a seizure. Just right and perfectly in the middle? The joke’s on us… blood glucose levels can often change quite drastically during activity, so it might go too high or too low anyway.
Don’t forget to also check it if you’re going to drive, if you feel “off”, before you go to bed at night, in the middle of the night, more frequently during a growth spurt, an illness, or during your period… and so on.
Checking your blood sugar upwards of 12 times a day and giving multiple shots every day? For the rest of your life? No big deal, right? It’s just that… forever. Except…
It’s not just that
There’s even more to it than multiple pokes, prods, and injections every single day. Blood sugar readings aren’t just numbers on a screen. Those numbers represent something happening in the body. Often something that shouldn’t be happening. There’s a reason they cause symptoms like lethargy, blurry vision, and seizures.
High blood sugar
A high blood glucose number means there is too much glucose in your bloodstream. Your blood is being gobbed down by sticky sugar molecules that your body is unable to flush out on its own.
The glucose wants to get into your cells to give them energy, but it’s locked out. Insulin is the key. The glucose needs insulin to get in. To get where it’s supposed to go.
Without insulin, it just stays in the blood, building up and up and up. If insulin isn’t given, your body has to find an alternative. It starts breaking down fat.
You’d think that would be good. Don’t most people want their bodies to break down some fat? But then you learn that your body is basically eating itself away. And that burning fat creates a by-product called ketones.
When too many ketones build up in your system, they change the chemical balance in your blood.
Left untreated, this causes death.
Even when it’s treated promptly, this series of events has started in your system. It’s not going to make you feel very good. Many people will feel nauseated, tired, and moody.
Low blood sugar
As one could deduce, low blood glucose is too little glucose in your bloodstream.
There is nothing to energize your body. Vital organs like the brain, kidneys, and heart are not getting the energy they need.
The body cannot function normally.
So it’s no surprise that it causes headaches, fatigue, mood swings, blurry vision, and trouble concentrating.
If left untreated, this causes seizures, coma, and death.
And, even if it is treated quickly, your body may not bounce back as easily. Once your blood glucose is back in range, you still may be feeling the effects of the low.
I get it
But people with T1D look so healthy don’t they?
You’re generally not going to see all of the work and stress that goes with managing T1D. People say it gets easier, but it doesn’t. We just get better at dealing with it. And that means you’ll see even less of what we’re struggling with.
It’s not a cold.
Not a one-off like a headache or stubbed toe.
It’s not a minor inconvenience like having to take the dog for a walk when it’s pouring rain outside.
I know that seeing one finger poke, calculation, or injection can give the impression that it’s not a big deal. That it’s simple enough. All you’re seeing is the simple part though.
I’ve barely even mentioned the hard, complicated stuff. And the all-the-time-ness of it all.
Everything you do. Pokes, adding, guessing, planning. It never stops, and if you do, at the wrong moment, it can cause permanent damage.
Multiple pokes and needle sticks every day… for the rest of your life.
Knowing (or guessing) the carb count of every bite of food that goes in your mouth and having to give yourself a life-sustaining hormone based on those numbers… for the rest of your life.
Worrying about blood sugars constantly, every day… for the rest of your life.
Let’s be serious, it’s more than most adults could handle.
But please, tell me again that my 8-year-old (or anyone with T1D) should “get over it”.
~ Leah
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Wonderfully said. Thanks so much.
As a grandma with 2type 1 diabetic grandchildren this is perfectly said get over it is a suicidal idea
Thank you Evelyn. Best wishes to you and your family. 🙂
Thank you Colleen 🙂
Everything I’ve ever wanted to say. Thank you
Thanks Percella. 🙂
Thanks for leaving me in tears thinking about all the things I watch my kids go through every day. This is so much better an explanation of things than I have ever been able to give anyone for why my “healthy-looking child” just collapsed in the middle of class, or completely lost his composure and starting crying over seemingly nothing, or why some things aren’t good for him to eat, or why he has to “shoot up” before meals… Now I have something to direct those people to.
Oh gosh, the “healthy-looking” thing kills me! That’s a big part of the problem. Most people with T1D *look* healthy. And really, they are for the most part. They can do everything anyone else can, but it can still get serious and take a bad turn seemingly out of nowhere. I even find myself at times becoming a bit complacent (for lack of a better word), when things go smoothly for a while. Even as the primary care giver, it can be hard to remember how this disease makes them feel and what it does even when they look “fine”.
Thank you. I’ve been a T1 since 1985 when I was diagnosed at age 13. This was before blood meters when we tested with urine. Yuck. My extended family (cousins, aunts, uncles, etc…) that only get together with us for holiday dinners just do not get it. I honestly don’t think my husband of 32 years gets it. I just know that I wish I didn’t have it and would never want anyone else to have it. I don’t think I’ve had a full night of sleep in 41 years. It has gotten easier to deal with having blood meters and pumps now though. Your article is on the nose.
As a parent, I don’t think I fully “get it” either. I think it’s important to acknowledge that. I empathize with my son as much as I can, and I hope that makes a difference, but there are people who just don’t care and don’t want to know or learn anything about it. I personally knew nothing about it until my son was diagnosed 5 years ago, so I can’t fault anyone for not knowing. It’s when they *think* they know that it really is frustrating. And there are LOTS of people who think they know.
Beautifuly written!
Thank you Cassie! 🙂
Oh man, I can totally relate. My son is older, 14 at diagnosis and 16 now and while no one has ever really verbalized that sentiment, I can hear it in the silence whenever I say something because there was another scary moment, another sleepless night, or another tough “I hate diabetes” . My family how loves him so so much goes completely silent…*Crickets*. I’m referring to social media because all our support aka family lives thousands of miles away. I very much get the ” what’s the big deal, get over it” vibe from their silence because if it’s not diabetes related they are all about commenting or liking my posts. It’s so frustrating and hurtful, I’m just glad my son is unaware as he isn’t on fb. Thanks for writing this and sharing it!
That is so common Theresa! People don’t like to “like” or comment on T1D stuff on social media. While it is possible that the silence is because of the “get over it” attitude, I do want to point out that some people are reading your posts and just don’t know what to say. I can’t tell you how often I’ve heard of people who are upset because no one responds to their T1 posts and then out of nowhere a friend or relative messages them thanking them for their posts because they helped identify early T1 symptoms in someone else. It can be really frustrating, but chances are, at least a few people are learning and taking in the information when you post. <3
My grandson has had T1 since the age of one. He’s now a healthy remarkable 14 year old for which I thank God every night
I love hearing those stories Bill! Thank you! 🙂
Wow. So powerful. I have type 1 diabetes and have for 39 years. I was the only child with diabetes growing up. While my parents are great, there were times you wanted to scream and quit, but you can’t.if you you quit you die, that simple. This was a very powerful statement and eye opening to those who don’t get it. Thank you. Your child is like I am very lucky to have parents that understand and fight for them.
Thank you Dana! T1D is a huge responsibility and even though you technically have to “deal with it”, that doesn’t mean people should be unsympathetic about the struggles it comes with. It’s hard enough to deal with on a daily basis without adding the negativity of other people into the mix.
Devil’s Advocate here.
I hear what you are saying, and I get how saying to tell them to get over it is is insensitive and just plain rude. Absolutely. I have a (now) 15 year old daughter with Diabetes . I have heard some pretty crazy… insensitive…stupid….and even downright ignorant things in the past nine years lol.
However, that said, I think the parent’s mindset and attitude has a lot to do with the mindset and attitude of the child.
Everything you said was perfectly true, but I personally wouldn’t portray it that way to my child with Diabetes. When she got Diabete at six we were very matter of fact. We educated her about it. She was included in any and all decisions about her care. But we didn’t present it to her in a way that indicated to her how devestated we were that she had it, or that it was the end of the world. I remember telling myself “This is manageable. It could be worse. She could have a brain tumour.”
I thought….. truly? Thank God it is “only” Diabetes and not some truly awful childhood disease that was definitely going to kill her.
If they are given the idea they are supposed to be devestated by it they will be. If they are given the idea “it’s no big deal, and we can manage this” they will, too.
If you present it in a matter of fact way, that this is something they now have and need to look after and manage, that’s how they will see it.
I think, in a way, that that is maybe what people mean.when they say “Get over it”…..although it would be nice if they expressed themselves in a nicer way….:)
I absolutely agree! I must say, I write on this blog differently from how I act/ speak about diabetes with my son. We are also very matter of fact most of the time and I agree that the parent’s attitude rubs off on the child. But after 5 years, there are times when he gets sick of it. And particularly a few months ago, he was having those times more frequently. (It’s calmed down significantly since he went to D-camp a few weeks ago).
Sometimes I respond with a “well, you have to deal with it” kind of attitude, and sometimes I agree with him and say “Yes, this sucks” and give him a bit of time to feel sad or mad about it. Ultimately, we have to deal with it and keep going.
To me, it feels out of place when someone who has no idea about T1 says something like that though. Regarding the specific situation that caused me to write this article: that may be what my relative meant by the comment, but it was a discussion about how my son was having an increasingly hard time with d-related stuff and we were looking at different ways to go about helping him deal with it. Granted, “get over it” is a way to deal with it, but other options like D-camp and outings with other T1D families were being brought up, and I just personally found those much more helpful.
Sounds like you’re doing an awesome job with your daughter and you’ve found what works for your family. A positive attitude goes a long way!
I have friends with T1D. It affects every organ in your body. One had thyroid cancer.
My other friend had such a struggle with keeping her blood sugar levels up she had to get a service dog to help her detect her blood sugar levels. And that was out of pocket…not covered by insurance.. She’s spent most her life in the hospital. Her kidneys shut down and she was on dialysis. She was fortunate to receive a kidney and pancreas transplant but now has to worry about organ rejection. The takes tons of anti rejection drugs. People who have organ transplants have a 20% higher chance of developing certain cancers. She’s not even 40.
I wouldn’t wish T1D on my worst enemy.
Yes, T1D affects every aspect of your life. I’m sorry about your friend. We’re very lucky that those transplants can happen, but they do come with their own complications and risks unfortunately. I hope it works out well for her. It’s certainly a scary situation to be in.
My son was diagnosed at 2 yrs and is now 23 yrs and doing great. But oh…I would have gone crazy with that comment. If people like that spent one day mimicking the life of a type 1, I think they would have a better understanding. Just one day and they would be exhausted. These kiddos live it their entire life.
Yes, exactly! I know it’s unrealistic to expect people to understand. Even people who are close with my son (and who try to be understanding) don’t understand half of what we do on a daily basis. But the people who ACT like they know, they drive me crazy!!
My son was diagnosed at 6 years old. He is 20 now. It’s hard as they get older to leave them to manage themselves, to let them grow up. and stop asking if he checked his blood sugar or did his needle. A few months back he was at a gas station, he had a low blood sugar and said something to that effect to the clerk in the store that he needed sugar, and he passed out. He recalls hearing someone say “must be drunk”, before they called the police. I knew something was wrong when he did not come home from work as expected, and I started pacing, I had a very uneasy feeling. I then got a call from the police, my son was in the emergency room at the hospital – just now coming around. I rushed to the hospital, to be stopped by the police before going in to see him – we just want to warn you, he’s a little marked up, we thought he was drunk and he fought us, we had to restrain him. Well I burst into tears when I saw my son, his face was scratched up where he fell, he had handcuff cuts on his wrists, and bruises on his shoulder. My son was in a work uniform – but their first assumption was he was drunk!
You would think the police would know a little more, it was not until the ambulance came that they knew he was suffering from a very low blood sugar.
Oh my gosh! That is scary. Hypoglycemia is so often mistaken as someone being drunk or high. Even by people who should have some training, like police officers. Glad they figured it out and got him treated.
This is, as everyone stated, really well said. I would add only that, having T1D ( used to be erroneously called “juvenile” diabetes, for 47 years that there is hope. There is hope to live a long (and sort of), normal life. I have had issues- during pregnancy, for instance. But I have since age 11, had an attitude of I CAN live with this. And a positive attitude really helps. Maybe I have been lucky- but I will continue to use my insulin pump until there is a cure. And there will be one. There are doctors all over the world who are getting closer and closer.
Keep up hope. Your young children will take their cues from you. I don’t mean “get over it” I mean, try to keep some of the focus on hope. It’s how my parents dealt with my diagnosis when there was no information about the disease at all. We are lucky…and we are strong for having to learn to live with a crappy disease. But we will beat it and until there is a cure…hope!!
Thank you Bonnie. That is fantastic advice. Personally, I am very “matter of fact” about my son’s diabetes with him. I do tend to write differently (kind of the things I wish I could say, but never do). A positive attitude really does help, in fact, I have written about that as well —> https://carbcountingmama.ca/t1d-unexpected-murphys-law/. Always hope for a cure!!
My Daughter was diagnosed at 14. She is now 24. I watch her with pain. I watched her lose confidence, social skills, I watched her become depressed and I watched both of us sink into a bubble of sadness and fear. I didn’t know what to do to encourage her or to help her from feeling so different from her peers. Then one day I happened to watch a programme about a child who was severely ill, possibly terminal. I happened to question how a family dealt with a child in those situations. My Daughter was about 17 at the time and indicated that we knew how that felt. I couldn’t bear to hear her liken herself to someone who was ill, watching her sink in life and all she could do with her life so iv heard myself say “get over it!” I couldn’t bear that I’d said it bcos I too was feeling sorry for myself as well as her. But I have to say that while I could not minimise what she (we) were going through it was possibly the best thing I could have done. My Daughter since then made sure she has an amazing life. She has a Law Degree and is training to be a solicitor, she plays competitive Club tennis, has traveled to and worked in Australia on her own and has done so much in her life. So maybe no matter how hard it is for us as parents, it’s so much harder than thaw person dealing with it and it is our job to make sure their life is successful and happy in spite of type 1
I really like this story. The thing is, different things will work for different people. I personally believe that the people involved (the person with T1 and/or their caregiver) can tell themselves or each other to “get over it” and it’s different than someone on the outside saying it. I think it’s different motivation that makes us say it. I’ve said similar things to my son. Not “get over it” exactly, but I have told him that we can’t change it so there’s not much point dwelling on it. There’s a time and place for that though. Coming from a mother who wants to see her child succeed is different than coming from an acquaintance who just doesn’t want to hear about it anymore. Your daughter is an inspiration!!
Thank You, I LOVED this article. Not only was it true and honest, it was informative and descriptive. I agree with everything you said.
Thank you Marlisa! 🙂
I think that it is significantly worse for the Mother of diabetic than the diabetic. I’ve been T1 for 27 years, I was diagnosed right before my freshman year in high school. I was getting a physical to start football practice and the Doc said that football probably wasn’t going to happen, but I’d have to wait to talk to the endocrinologist. At my first appointment, the endocrinologist told me if I let it control you it can, but with a little work it shouldn’t limit me. It is different when it is your kid, but I am glad no one limited me.
I LOVE your synopsis of this life changing diagnosis. I’d like to send it to so many people. Thank you for writing this. My son is 22 and was diagnosed at 11. He’s doing great and passionate about his health and helping others with T1d. So grateful , was not always like this!
Thanks for sharing. I get your perspective. I have had T1D since I was 11, diagnosed in 1975. Back then, we didn’t have the luxury of insulin pumps or blood testing machines (let alone a CGM). My dear mother weighed all my food but kept me active – sometimes too active as I probably had 20 ambulance rides before I got to college. I was very active in sports, playing all three sports in high school and baseball into college. Staying active saved my life, that and not having parents that fretted over my every move.
I’m now 54 and in great health. I am an endurance athlete and business owner. I hate the disease but never let anyone know it. I do just “deal with it” whether I think that’s fair or not. My message to you and all of the other parents I have met and spoken to is that it is not EASY to just deal with it but you’re going to have to or else you will be miserable for the rest of your life.
I have dealt with it and am stronger for it and your child will be too. Do not over analyze and drive yourself crazy. Monitor and adjust. Take a deep breath and acknowledge that this is the hand I’ve been dealt and bitching about it isn’t going to change it – it will just make you more miserable and your child’s existence miserable too.
For those people that “Don’t get it,” who cares. Are they really going to impact you or your son’s future? Probably not, but you will. So stand up, take charge and don’t let the disease manage you. If you manage it, you will control it and while the impact is always there, your life will not suffer nearly as much because of it.
Good luck.
Hey Carb Counting Momma. I wanted to tell you that I shared this blog post on July 22nd to my FB page. A friend had shared many posts like this over the last year, her son had been diagnosed with T1D 18 months ago. On August 1st, I used my mom’s borrowed glucose monitor to check my daughter’s sugars and that night they diagnosed her with T1D in the ER. Your post, along with others, brought T1D to the front of my mind, and the whisper in my heart to test her. Thank you for sharing, I’ll be following your blog now.
Oh Sonja, I’m so sorry for the diagnosis! However, I’m very glad that you recognized the signs and were able to get your daughter to the hospital. It’s overwhelming to deal with, especially when everything is new. I strongly recommend seeking out online groups to join (there are plenty on Facebook, I personally LOVE T1D Mod Squad). And take things not even one day at a time, but 4 hours at a time.
I really appreciate you taking the time to comment! It means a lot to hear your story. My very best wishes to you and your daughter, Leah
As a parent of a 13 year old T1D child I would’ve stood up and told them to “get the **** out of my house…and GET OVER IT! I would NOT have allowed that idiot to stay another minute on my property!!!
I hear ya! We were staying at someone else’s house, so it wasn’t exactly our house to kick people out of, but I completely understand the sentiment!!