Diabetes isn’t all low or high blood sugar. In fact, there are all sorts of challenges that come with being diabetic, some visible and some not. Without a doubt, one of the biggest challenges of being diabetic is trying to help friends and loved ones understand just what it is like.
Quite often, if someone has never experienced a hypo, or the frustration that can come with a particularly stubborn blood sugar that just won’t correct, it is near to impossible to get them to understand how it actually feels.
In the time I have spent in diabetic communities and groups online I have seen so many things mentioned by diabetics that fall into the above category. Whether you’re a diabetic yourself and want to get an understanding of how other diabetics feel and what challenges they encounter or if you’re a non-diabetic who is better trying to understand how a diabetic friend or loved one may be feeling, hopefully this page is for you.
Below you will find a collection of real comments from real diabetics around the internet and world.
I wish more people understood that when I have a spike and my sugar is in the 300 & 400s, I cant function. I become exhausted, my pain gets worse, I am in a total fog, easily irritated and don’t want to do anything besides nap and wait for my sugar to come down.
That it effects our emotions and mental state also.
Just how HARD it is! And how mentally exhausted you are. And how it can really take a toll on your mental health. And how high/low blood sugar affects your WHOLE body and fixing it takes time. And even when it’s “fixed” you might still not be yourself. And how you need time to take care of yourself so for example, when you’re a teacher, you need more than 5 mins to eat lunch and take care of things. And if you don’t get this time, you WILL have a breakdown.
That cinnamon won’t cure us
I wish people understood that my son really doesn’t feel good physically, and that this disease affects him mentally and emotionally as well
I wish people knew how much TIME it takes out of every day, how much EXPENSE, how much ENERGY it takes to think about this every moment of every day, no break EVER. How when I say “I need to test my blood sugar NOW,” I don’t mean in 5 minutes or even 1 minute. Now means NOW.
I wish people understood that my lows are not caused by eating too much.
I wish people wouldn’t make jokes about how if people eat too much candy they get diabetes.
I wish someone understood where I’m coming from before commenting or criticizing what I do for my condition. I don’t like feeling like I have to defend myself for something they know nothing about.
I wish people understood and was accepting of the depression from what we deal with, constantly feeling like being a walking pin cushion and having to worry about what will happen if we eat this or that or dont eat at all or what happens if we miss a shot or two or forget our meds at home etc.
I think we deserve more respect for the fact that we live with this devastating disease. Ppl hear “diabetes”And immediately start blaming us instead of respecting the 24/7 grind of being t1 on top of being functioning human beings
That I am in charge of my sugars and asking “do you think you should be eating that?” Is condescending and rude. Also I can’t “fix” this and I didn’t “cause” my diabetes
yes we can do everything. yes I can eat that!
I wish people understood that sometimes I NEED the candy. That my “low” is different from healthy-people glucose readings and is based solely off of how high I’ve been running lately and at what point I can’t think to drive… That coming down from 200 to 100 too quickly feels the same as dropping low. Sudden shifts are exhausting.
That my new A1C of 6.8 is something I’m proud of after a year of other medical struggles affecting my diabetes management.
I wish folks understood that no ones blood sugar is always perfect and some lows/highs are not a result of something I did or didn’t do. Being a diabetic is not my fault…
That’s it’s 24/7 everyday for life, u never get a break
I wish people understood the difference between type 1 and type 2 diabetes
I wish jobs were more accepting of it. Like I understand I have no sick time or vacation time to use but if my blood sugar is high all night and I’m sick the next morning and don’t want to go to work because I’m exhausted and puking then I should be allowed to stay home without being threatened to lose my job. It’s so hard somedays because I have to go to work completely useless for the day..
I wish people knew what it’s like to have to carry all this extra stuff around. “Why do you have such a big bag? What’s in here?” I work 16 hour shifts sometimes, so I bring a lot of supplies. And when I go on a 30 mile bike ride, I need a lot of carbs to keep going. I don’t expect anyone else to carry this stuff. So yes, my bag is huge!
I wish the medical community had a real understanding of type 1
Just how much time and energy it consumes to manage it well
I wish people understood that we are normal people who also have diabetes. We are not sick people, we are not diabetes
How exhausting it is. How even if you take care of yourself it’s still exhausting physically and emotionally. It’s everyday 24/7 we never get a break.
Sometimes I wish everyone had to walk a day in my shoes to find out what it’s like. Just a day then it’s gone for them. Just for understanding and the hope they can find more empathy for what we go through.
I want people to know what to do when my sugars are low and making no sense. Giving me soda can stop a seizure
There are many, many reasons why our bg levels fluctuate
There are way more than 2 types of diabetes. A lot of type 3cs are misdiagnosed as a different type, and there is almost no information out there in terms of care guidelines. It’s difficult for us to get the equipment we need in the US because insurance companies have discriminatory policies. Most plans only allow type 1s to get CGMs and pumps covered, so us type 3cs that need those things either have to go through time consuming appeals or have our doctors lie about our diagnosis.
Here Are A Couple Of Videos That Also Nicely Summarise Some Of The Things Diabetics Wish Others Knew About Diabetes
What Do I Personally Wish People Understood About Diabetes?
Truthfully, my sentiments echo those of my fellow diabetics that have been shared above, I feel an affinity with every single one of them and what they said.
However, if I had to pick one thing I think it would be how diabetes never has an off switch. One day you’re never worrying about your blood sugar, what you are eating, whether you’ve got enough batteries or tests strips or whether your insulin is on hand and cold. And then the next day you never stop thinking about any of those things and won’t do for the rest of your life.
I believe I am quite mentally resilient, I feel like I have a certain toughness and can take most things in my stride. Even so, I have days where this all gets on top of me and I feel a deep seated despair and resentment. No doubt there are plenty of other diabetics out there who feel exactly the same, and more frequently than I do.
Ultmately, I guess what most diabetics would want non-diabetics to understand about diabetes is that it is a daily challenge and the more those around us can do to understand and support us the better we can handle it!