What Non-Diabetics Should Understand About Type 1 Diabetes: Insights from T1D Warriors

November is Diabetes Awareness Month. I recently asked my T1D Instagram followers what they would like non-diabetics to know about the condition. Here’s what they said:

"It’s Not Caused by Diet or Lifestyle. It is an autoimmune disease, meaning it’s not caused by a poor diet or an unhealthy lifestyle. –thediabeticfighter

"It doesn’t 'get easier'. No matter how long you’ve lived with it, it is an anomaly every day and while someone can be doing a good job managing it, that’s not to say it’s easy for them." - aligal06

"It's constant even when we sleep. Get up to go to the bathroom middle of the night? Check. It's so much more than a non-t1 will ever know." - thjryisin

"It's not 'just diabetes.' It’s living under constant awareness that my life hangs in the balance and is completely dependant on my ability to do math and be prepared for most anything in any situation." - 3girlslee

"While I appreciate the concern so much- please don’t tell me what I can or can’t eat…" - ktrencha68

"T1D is not the same for everyone. What works for one may not work for the other." - rlmd74

"A person isn't necessarily born with it, but it doesn't mean they caused it from eating too much sugar." - nickiecarrigan_

"Burnout is a real thing. Friends and family support are important. Offer to go with someone with T1D if they need to leave a social outing to grab a supply they forgot, or if they need to get a snack for a low. T1Ds are constantly making decisions and figuring out how what activity they are doing, or what foods they are eating & drinking, will affect their blood sugar. Don't take it personally if they seem like they aren't listening or are on another planet sometimes. Give them a hot second." - nickiecarrigan_

"I think we should rename T1D and differentiate type 1 from type 2. So many people have such a bad stigma around 'diabeties'. I hate hearing 'they have it real bad'. Wtf does that even mean? Just leave me alone and it should be no one’s business if I do or don’t have T1D. No one states that they have any other immune disorders to the world. Why should we?" – kermopd

 "If I’m having a hypo I need sugar, not insulin " - carleesi_x

"That we’re on life support every day with our insulin, and without it we are done for. That alone right there is extremely overwhelming… and also the truth." - inhismecy_629

"No, I don’t have a pump because 'I’ve got the bad kind of diabetes', I use a pump and cgm to help manage my diabetes." - lesliemertens

"That you can’t cure my daughters T1D from changing her diet and having her eat healthier… Someone legit told me this when my daughter was eating a cupcake at a birthday party." - fixyourcrownprincess

"the mental toll it takes on a diabetic and how it affects every single organ in your body" – pwolfy

"Don't get angry at me when I'm low. I'm not responsible for what I say or do when I'm low. There is a 99% chance I won't remember what happened when I come out of it." - wigglesmama

"There is not the good or the bad type. And it’s not the worst type if you have to inject insulin … stop asking if I have your grandma’s type of diabetes  - tinestypeone

"Your kids can be babysat, they can go to camp in the summer. Your dog can be walked by a neighbor or friend. Do you have days off and holidays from your job? But a type one diabetic can’t take a minute off their life not thinking about being diabetic. The average person has 60 to 70,000 thoughts a day, the average diabetic has twice that over 120,000 slots a day is bound to wear you out. And that’s sleeping is no escape from it either." - diabeticbydesign

"I hate when I get asked how many units of insulin you give yourself a day… hum it’s totally different from day to day I also cannot stand the silencing of constant alarms. It’s in my pump, on my phone, on my Apple Watch. Oh and I hate the food police…" - sardamf

"The mental exhaustion from the decision making. The physical exhaustion from the highs, lows & sleepless nights. The emotional exhaustion from managing it all and doing 'normal people things'" - diabeteshealthcoachuk 

"I can have something sweet if I fancy it, that’s what insulin is for" - sunspray_spray_tanning_lincoln

"It doesn’t matter that its 'natural sugar'- fruit will still spike my blood." - alana.pdx

"That when we have highs/lows, our emotions can be out of whack" - jinx_gemini_012

"It's a 24/7 full-time job where no day is ever the same as the previous day! How many people have a job that lasts 57 years long... on top of regular pay the bills work (I'm still working in my 60's 😘🤣)" - fatcatanna

"Technology is not a cure. You still have to manage it." - momof3balls

"That it is not set it one day and it will be okay for the rest of life! It is constant work!" - stephanielrbrown

"That type 1 diabetes is a life-threatening condition. Not just 'so you can’t eat that?' or 'are you allowed that?' it’s constant decision-making. Daily decision-making because if I don’t then I will die, that I NEED to inject so no I can’t just go off to the bathroom to take my insulin, no I can’t just skip my injection. No I can’t get rid of this. I would just love for non-diabetics to have a bit of empathy and self-education” - type1trin

"It can make you opt out of things you used to enjoy because it just takes a little too much to try to be 'normal' in many situations." - jdreichluv

"It is not because I had too much sugar chocolate cakes and ice cream" - chekkyazeem5825

"Insulin is in the top 5 most expensive liquids in the world (behind Chanel #5 & cobra and scorpion venom??). T1 die without it, life or death with a price tag." - martinamusicmch

"Just because it’s manageable doesn’t mean it’s easy." - nicolesl214