My 12 year old daughter was diagnosed at 8 years old with type 1 diabetes. People in general have left me flabbergast with comments about type 1. First, my daughter’s teacher told her she was born with type . This left her confused. Of course I corrected her. Two months ago my daughter was admitted to the hospital almost in DKA because she had the flu. The hospital was understaffed and very packed so an EMT was administering her meds. She had the nerve to look at my daughter and ask if she will just grow out of it…. I was shocked coming from medical professional. Before I could say anything, my daughter corrected her. Then tonight at Christmas, my father in law pulled me aside to talk about her health and said, “ we believe she will just grow out of it, I didnt know she has to be watched all the time”. I have explained this, but it’s not clicking. Even coming from medical professional. I feel like I’m in the twilight zone and it’s is so confusing for her. What is going on?Sometimes you already feel alone as a parent, but dang no one fully understands
It’s crazy how foreign the concept of diabetes, type one specifically, is for people. I’ve heard it all by now and it’s frustrating at times.
Also, welcome @Summermom! I’m dad to @Liam-M, almost 12 (12/30), diagnosed at the ripe old age of 2, in 2016).
Yep, it seems a very foreign concept unfortunately
@Summermom I share your initial repulsion at the concepts you’ve run into. Unfortunately, you’ll find numerous folks, many here on FUD, running into the same thing: i.e. ignorance by lay people and medical staff, lacking basic understanding of T1 and T2 diabetes. This is particularly true when it involves the medical community we expect should know better. In their defense, the argument can be made medical information has grown exponentially and the breadth and depth of expected knowledge may be insurmountable, sometimes even with those aligned with diabetes related specialties. Most medical types rely on training received in school, so it can take 10-20 years for the current knowledge to take hold. Using myself as an example, I was dx’d diabetic at age 58, my PCP had been trained I couldn’t be T1, so I was dx’d T2; results of oral meds worked a bit, but quit entirely after a couple of years at which point my PCP educated himself, referred me to an Endo who did the appropriate tests confirming I was T1, put on insulin and CGM immediately and a pump one year later. The argument against is that a disease/condition common to ≈10% of the population for T2s and ≈.5% T1s deserves better factual understanding. Ref the obvious non-associated folks, such as your father-in-law, the lack of knowledge, while objectionable, can and needs to be viewed as an opportunity to educate the masses on the “actual” facts of diabetes: causes, treatments, differences between T1 and T2. Yes, it can get tiring and irritating and only you can be the judge of when if it’s worth your time; but please ensure you know the correct “actual” facts about both T1 and T2 and be willing to share, as forcefully as warranted, with others. Perhaps a “sit down” with family might be helpful and short-circuit the time and number of questions/statements.
Yes. This stuff happens and it will never stop happening. People don’t know ■■■■. Medical professionals don’t know anything.
Her ability to advocate for herself as she grows up will be an important skill. How she chooses to exercise that, will be kinda up to her and you might expect her relationship with her illness to change over time. She may or may not want to discuss it with other people.
You will quickly become overwhelmed if you try to explain all this to everyone. Some people are natural born street medics and just blessed with an ability to understand and help. Those people are rare.
As a kid, no one really talked about my diabetes, made any accommodation, had any understanding, or provided any help whatsoever. I could be dying of low BG and my dad would be like, “Don’t bother me, I’m trying to read a map.” My mom was useless. She knew nothing. I knew from a very young age that my survival would depend on me. I think that’s OK because that’s how the real world actually is.
I’m so sorry this was your experience. 
Trust that the real world isn’t always like this. @Liam-M is my top priority. Has been for a decade almost and I’m not getting tired yet…I can’t afford too. I look at it like, if i can’t handle it for 15 or 20 years, how can I ever expect him to handle it for another 80.
Just keep realistic expectations.
I try to think about it like this, “What do I know about MS or Parkinson’s or long covid?” You just can’t expect everybody to understand the finer details, or even the basics. You can educate people, but know that some people are easier to educate than others. Not everyone is educatable in the same way. Some people might be very interested in the tech, but have no interest in the financial issues associated with diabetes.
In all honestly, I really enjoy having certain friends for which diabetes has literally never enter the conversation in the 25 years that I have known them. Those people are great - refreshing.
I think that thing that was difficult for me to understand was that I, as a diabetic, actually don’t have the same civil or financial rights as other people. Just be prepared for that. That caught me by surprise.
What makes us each different than other people is something that can really incorporate into identity. That can be a largely positive experience overall, but if that identity forms it is often built from the cumulation of negative experiences.
Welcome and sorry to hear that and sad people actually think that. Someone growing out of it is a new one for me. I get the good kind vs the bad kind of diabetes all the time.
They all suck!
@Summermom welcome! I am sorry that you have had such poor experiences already. Michel here, father of Kaelan, who was diagnosed with T1 at age 11. Kaelan is now 21 and a junior at UCLA. He is doing great and I hope he will keep on doing so!
Like many other parents of T1s here I’ll be happy to talk to you directly! If you wish to chat, DM me and I’ll give you my cellphone.
I’ll quickly mention three points that were important to us:
- The key for us to ramp up was to take every course available to parents at Children’s
- The key for Kaelan to figure out what he could do was to go to diabetes camp the summer he was diagnosed, and hear other T1s, the camp counselors, who has been T1s for 10+ years
- The weekend K was diagnosed, my wife and I decided that we would raise him in such a manner that he would never feel he was limited by diabetes. We told him: “you can’t fly a commercial plane, you can’t fight on the front line and you can’t enlist as a submariner. Everything else in the world you can do as well as everyone else.”
Looking forward to have you around!
I hear you. I vacation in the Caribbean and my insulin pump gets noticed a lot and people are curious. They’re familiar with “having the sugar”, i.e. T2, and have never been taught nutrition in school. I love to tell them that without insulin, I will die in a few weeks. That really sells it.
We are gonna fix some of the financial problems that no one understands before these young kids come of age. Watch Cuban vs Optum. Its the fight of the century. 
https://x.com/GeBaiDC/status/2004931798279586072?s=20
If it’s confusing, you can watch this as a starter. https://www.youtube.com/watch?v=k0bcWlI4ht4&t=5s
You are so right! I also notice that my daughter likes to have friendships where diabetes isn’t even mentioned either. I feel like she gets tired as well.
Thank you so much for your reply. I was more letdown by medical staff which shocked me to a degree as well as scared me a bit. I agree that a sit down with family may be in order. Thanks again!
Wow, I’m that happened to you! I have tried with everything in me to make sure my daughter doesn’t feel alone in this. You are very strong!
Yes, it sucks. For some reason we get the “grow out of it” alot. It’s exhausting and makes you angry.
Great points! Thanks!
Hahaha, it’s a crazy you gotta break it down to that degree, but I don’t think there is no other way!