Saturday, April 13, 2013

What Not to Say

Since our girls have been diagnosed with type 1 diabetes, we have heard a lot of little "tidbits" from people. One of the most prevalent is "they'll get used to it."

I don't think so...

What I do think is that there is  A LOT of misinformation and confusion about type 1 diabetes out there. With that in mind, my husband and I try not to take offense when we hear that phrase, even though those words make us cringe. After all, we didn't know anything about it until we had to. Mackenzie, on the other hand, gets very upset by comments like that.

Does any one really get used to...

Having to count every carb that they put in their mouth before they can eat it? You're often still counting the carbs while everyone else is already eating.

Having to prick your finger with a needle 4-10 times a day, every day, no vacations?

Getting a shot every time you want to eat? Hooray, Halloween candy. Then you remember the shot and it's suddenly not that exciting. At best, if you have a pump, you can exchange the shots for a site change every 2 or 3 days.

Having to take a shot of long acting insulin that stings so badly that you cry almost every night?

Having people stare at you while you get your shot when you eat in public? Or the constant questions regarding your pump? "What is that?" "What is that tube hanging off of you?"

Having to eat candy because they are low not because they'd just enjoy a piece of candy? Or a juice box?

Getting a shot while you're trying to sleep because your blood sugar spiked for some unknown reason?

Getting woken from a deep sleep because your blood sugar is dangerously low and you need to be treated?  Funnily enough, when the girls were first diagnosed this was a bit of perk. It seemed exciting to be woken in the middle of the night and get a juice box and a snack.

It's not anymore. They're exhausted and just want to sleep. While they can pretty much drink a juice box in their sleep, it can be a battle if they have to chew anything.  Kayleigh, in particular, really gets upset.  Take a look.

Wondering if this is the night that you drop low and nobody catches it? That is not a particular worry for my girls right now because we don't talk about that side of diabetes with them. But one day they will be on their own and caring for themselves and that will be a very real fear.

I don't think that my girls will ever really get used to it. Resigned to it, sure. They have no choice because, right now, this is their forever.

So the next time you meet a type one diabetic, maybe you can be the person who says something encouraging them. Something like, "Wow. I know that this disease is really hard. I'm really impressed with how well you manage it." And if you really want to make them feel good, take the time to learn a little big about their condition and share it with them the next time you bump into them. I know that my girls feel so loved whenever somebody really takes the time to understand what they're going through.


And before you leave, I'd LOVE it if you took a moment to learn about the Symptoms of Type 1 Diabetes so that you'll know what to look for in your loved one. And feel free to share the knowledge.


Charlotte said...

I'm a fellow Crew member stopping in to say hi... My mom had type 1 diabetes from the time she was nine, and I remember having orange juice or frosting always on hand for reactions, her testing herself multiple times a day, and the injections. What has made it harder recently is the prevalence of type 2 diabetes....people think you can get rid of all diabetes by changing your lifestyle. That was frustrating for all of us when people would drop comments like that.

And because of my mom I have the symptoms memorized, and am watching for it in my kiddos.

Nice job getting people aware of it!

Cassie Thompson said...

Oh Stefanie! That video made me bawl. Bless her little heart!

Holly Oshesky said...

You are an amazing Mom. Thanks for sharing this personal story. I've known a couple of kids and an adult who deal with this crummy disease. They are some of the strongest people I know.

Jennifer aGlimpseOfOurLife said...

With my fear of needles, I don't think I could ever get used to it.

Courtney said...

Wow! I had no idea! God bless you!

OSOTM said...

Aw, Kayleigh. :( I can only imagine the life changes that you all are going through.

Cristi said...

You're doing awesome Stefanie! The girls are lucky to have you taking such good care of them.

AmyB said...

I am so blessed by what you have shared. Thank you. I know many others appreciate knowing more about what to say to someone with Type 1 Diabetes.

Brian said...

I have adult onset type one. I was 29 at diagnoses. Because I was not a kid people always asumed that I had type 2 and could get rid of it. Thats not true I have been living with T1 for 10 years now and Im not used to it. I am homeschooling Dad of 3 and am watching for signs of T1D in my boys who are 9,8 and 8.

Kym Thorpe said...

I hate that anyone has to "get used to" all those horrid experiences. :-( I wouldn't wish those experiences as a one-time thing on anyone, never mind facing it daily and forever. You are doing such a great job of taking care of your girls and keeping your sense of humor and hope, plus educating others. I agree with what Charlotte said - most of us (that don't have first-hand experience with diabetes) have no clue about the vast differences between Type 1 and Type 2. They need totally different names, IMO


Related Posts Plugin for WordPress, Blogger...