What We Want You to Know

As I have mentioned before, I am very active in the Type 1 diabetic community not only on social media (Facebook, Instagram) but also a part of several zoom groups of Type 1s who meet regularly. This is not only great for support but gives me the opportunity to observe what are common struggles and which are less common. Recently I asked my Type 1 groups (who were diagnosed as adults) what they wish non-Type 1s (including Type 2 diabetics as well as non-diabetics) understood about living with Type 1. Instead of me writing the blog this week, I’m going to let you hear their words.

“Carbohydrate calculation is not always straight forward. Some of our medications make us feel sick. Our medications are expensive. Stop telling me I cannot have bread, cake, candy on a special occasion. My diabetes is due to autoimmune not from eating all the candies in the world. Mood swings from blood sugar is real.”

“That I don’t decline their great looking stuff because I’m rude or anything but rather that it truly can be a matter [of] illness & having problems regaining BS control”

“How bad the [medical] support and medical guidance can be.”

“We can whatever we want essentially. All the thought, stress, planning and just general extra thought that goes into managing it. The exhaustion.”

“STOP telling me not to eat sweets. Sometimes I don’t have a choice! I don’t even like them.”

“That I’ve been waiting all week for that slice of birthday cake and I cycled 4 miles to earn it ………… and yes I can have it ……..”

“I struggle with lows and I keep some favorite candy at home. Dark chocolate, jelly beans.. people see it and freak out. ‘You wouldn’t need insulin if you wouldn’t eat that junk’”

“The difference between what I choose to have and what I can have. I CAN have anything, but I CHOOSE to eat in a way that helps my blood glucose.”

“People can’t understand that we struggle with all carbs, not just sugar.”

“People don’t understand how complicated this is.”

“Every meal & snack feels like a big decision. It’s so easy to miscalculate intake & then you end up either with a hypo or being high, both of which make you feel awful. I wish people understood that you can’t just eat as much as you like when you want as a diabetic!”

“I struggle with the widespread delusion that insulin is a cure all that allows us to eat whatever we want and dose accordingly”

“That all diabetes is the same thing, & that uniform management strategies apply to all diabetics.”

“I hate that after a High or a low I still feel crappie for a long time and they don’t understand that just because my sugar is back to normal I still don’t feel back to normal.” (another person added) “And that you may have a headache for the rest of the day & just feel exhausted.”

“Aside from the physical impact, the relentless mental and emotional energy it takes to manage it and the toll just that takes. Living in a constant state of monitoring and deprivation.“

“Everything! I wish they could live it, at least one week!”

“That they could do it too if they had no choice – the needles – etc I’m not brave for doing it – I have no choice”

“That diabetes doesn’t stop. You don’t get a day off. That I am constantly making choices to deprive myself because I know it’s better for me in the long run. That while I could theoretically eat whatever I want, if I did I would end up feeling sick later and it’s just not worth it. That when I seem picky at a restaurant, I’m not just being difficult – I’d love to eat some stuff, but I know I can’t.”

“No days off for us! Someone said to me ‘can’t you just ignore it for Christmas Day?!’ Um no unless I want to end up in DKA!’”

“I control my levels pretty well, so some of my friends think I don’t have diabetes… like seriously… or they will say it’s okay to take a bit of cake or spoon of ice-cream. I literally have to tell them every time I can’t eat that stuff and I don’t even regret or miss it. It’s frustrating.“

“The amount of stress/mental space/time/planning it takes to be fully in control of diabetes.. extra medical appointments and consideration and just not even being able to leave the house without thinking if I have snacks/when/what will I eat, and if I took my meds. And even then, not being able to achieve it perfectly.”

“That I can’t just ‘skip lunch and press on’ even if we’re behind schedule on the day.“

“That this isn’t a diet and no, i can’t just have a cheat day.”

“That it’s not the same for all type 1’s. Different insulin ratios, different reactions to food etc.”

“That sometimes I feel like crap and it’s not my fault. Rollercoasters take a huge toll on me. I’m not lazy. I’m not faking. I’m just wiped out.”

“Everything..but especially the fact that you can’t diet your way out of Type 1/that your lifestyle and food choices didnt make this happen etc. And that it is a 24/7 thing!”

I think I have touched on most of these topics in other blog posts but I thought it was eye-opening to hear the first hand accounts from two dozen different people. These are all adults who got diagnosed with Type 1 as adults. A big difference between being diagnosed as an adult versus a child is many adults don’t have the built in family support that a child has. Many of us are doing it “alone” and family and friends struggle to understand.

Don’t be afraid to ask questions, most of us welcome questions. But try not to make statements or tell us what to do, ask in a way that communicates you want to understand! And hopefully my blog prepares you for how to be a great friend/coworker/spouse to a Type 1 diabetic ❤️