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What Not To Say To A Type-1 Parent

Things Not To Say To Type 1’s or Parents of Type 1's

Being 8 months into my sons diagnosis as a type 1 diabetic, I feel like I have heard it all and I’m sure I haven’t even touched the surface.  In some of my support groups I’ve seen other members recount horrid things that have been said to them by people who have NO IDEA what type 1 entails and how it is caused.

When my son was first diagnosed there was an outpouring of relatives, friends, acquaintances and even their acquaintances, offering their sympathies and well wishes. That was all much appreciated and we thank everyone one of them (and YOU if you are reading this and were one of them). But then came….dun dun dunnnnn…unsolicited and inaccurate advice or even insults.

LET’S GET SOME FACTS STRAIGHT

THERE IS NO CURE FOR TYPE 1 DIABETES 

Many come to us mom’s of Type 1’s claiming to have heard about this cure that their aunt so-in-so told them about or something they found on the web. I know that everyone means well, hopefully!, haha, but I’m sorry to inform everyone that there is NO cure yet for Type 1 Diabetes at this time. Type 2 can be reversed but is very different. Not plexus, cinnamon, prayer, okra (yep I’ve been told that one), vitamins, healthy diet or exercise can cure it. Insulin is the only thing that can keep a Type 1 alive. Now, that doesn’t mean that eating a healthy diet and exercising and other things can help with blood sugar levels and complications but TRUST ME, if there was a cure, Type One mamas would know about it! 

THE CAUSE IS UNKNOWN AND NOT,  I REPEAT, NOT FROM DIET

There is nothing more insulting than for someone to imply that the disease you or your child has was caused by something you did. Type 1 is an autoimmune disease that just happens and no amount of sugar or couch potato-ing can cause it! My child was a healthy, active and a fairly good eater and it happened to him. Why?  Because it can happen to anyone. So please, don’t even insinuate that it was something a parent or person did that brought this horrible disease onto them.

PLEASE DON’T SAY AT LEAST IT’S NOT CANCER

Type 1 Diabetes is awful. Cancer is unbelievably awful and I would never compare the two. Both diseases come with their challenges and heartaches. People die everyday from both. I believe what someone is trying to say when they suggest this, is that at least we have a disease that is treatable. We are thankful for that and thank you for the sentiment, but I think a better approach is to just acknowledge the challenges that we go through and offer support where possible. Every situation could ALWAYS be worse and I get that, but sometimes statements seem to discredit our feelings. 

CAN YOUR CHILD EAT THAT?

Guess what? My Type 1 child eats cookies, ice cream and even candy! GASP! Ha, it’s ok! Type 1’s can eat anything they want just like everybody else! The difference is we have to know how many carbohydrates are in everything they eat so that we can correctly dose with insulin to keep their blood sugar levels in safe range. Non type 1’s have a working pancreas that helps control blood sugar and type 1’s inject insulin for the same effect.

IS IT UNDER CONTROL?

I swear I get asked this daily. Sadly, Type 1 diabetes is never under “control.” We do our best to keep blood sugar levels within the normal range but soooooo many unforeseen factors affect this. Exercise, stress, amount of sleep, hormones, sickness, not being able to actually be a PANCREAS and because Purple Monkey Dishwasher! hahaha (get it!? sometimes it makes ZERO sense). Every day is different. The body has many variables, just like life,  and with the knowledge we have learned,  we have to make educated guesses on the amount of insulin and carbs to intake hoping that the stars align and blood sugars respond how we think they should. So, the answer to that question is NO. But we control it as best as we can.

MY HOPES
My intention of this blog is to just give a better understanding to the the non affected Type 1 community about how some things can come across to us when spoken. Education can go a long way and that’s what I’m trying to do. We know most people don’t mean harm for comments made and believe me, I’ve put my foot in my mouth so many times in life that I cannot point any fingers!! I once asked a woman when she was due years ago on my first day at a job (assuming she was pregnant)…Well yeah, she wasn’t! I learned to never do that again! LOL. Love and understanding. That’s what it comes down to. 

7 comments

  • Yes, yes, and yes! My daughter was diagnosed 16 years ago and is now grown, but we dealt with all of the things you mentioned. There was the gym teacher who insisted that even type 1’s are partially at fault for their condition – my daughter was a top runner on the school cross country team, for heaven’s sake! You are at the beginning of your journey, but it sounds like you are off to a great start! Your son has a caring advocate in his corner. My daughter is married now and has given birth to 3 healthy children, and I’m confident that with all the medical advances, your son’s journey will be even more successful. Here’s hoping for a cure for all of them!

    Wendy
  • I absolutely love this blog post Jennifer. It is hard to believe just how little people know about Type 1 diabetes and the stress it puts on a family. The hardest thing to explain to people is that although a Type 1 child may look healthy on the outside, they are at risk every hour of every day and sometimes that Purple Monkey in the dishwasher (haha) really gets on my nerves. My father-in-law stated it quite simply as " A healthy person’s worse day is usually a Type 1’s best day", now I realize that this may be a little bit of a stretch (but not by much) I find it easier to be more understanding when my Type 1 just is not feeling it. Thanks for sharing Jenn:)

    Crystal Rankin
  • “Is it under control?”, “I’ve read other people have it under control”, “how long until s/he will be under control?”, “How come you don’t know what to feed him before a practice or game to keep him under control?” “You can’t have them enrolled in two sports, that’s too much”, “why are their numbers so crazy at night?”, “My friends sisters cousin (twice removed) has a friend they haven’t seen in ages, but knows of someone else who sleeps through the night without getting up” UGHHHHH. YOUUUU DOOO NOT GET ITTTT! (And make me feel like a shitty parent at least every 3 days), so pleeeeaase, just STOP with your comments!!!
    Why can’t you keep them in your head, to yourself?!
    Do you feel that entitled, and that correct, that you have no problem repeatedly saying these things, even though we have been telling you otherwise for 7 months now?

    Ashley Jones
  • Love Love Love this blog post! Thank you for saying what you said with great grace and kindness. We have experienced all of these comments from well meaning family and friends. I too was just as naive about type 1 before our sons diagnosis and probably said things that were inaccurate about type 1 or some other disease or condition I know nothing about. This is a great reminder to be mindful of what others are going through and to also remember there 2 ways to respond to someone and one is always with kindness. <3

    Bev Kesselring
  • Great Blog Post Jenn! As a parent of a child with Type 1, I couldn’t agree with you more. <3 Blessings.

    Joyce Duran

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