Does anyone else's extended family just not "get" diabetes?

My husband has had T1D for twenty years. My dd has had it for over two years.

And my father STILL insists on telling me about all of his friends' stories about diabetes -- obviously type 2.

My parents STILL think that D can be controlled mathematically -- this much insulin for this much carb results in this blood sugar. Period. They just don't get the random variability of the whole thing.

My father has literally told me that he thinks it's great that my dd has diabetes instead of other "life-threatening" diseases. Yes, you can live with D, but I wouldn't call it great! We're thankful for what we have, but it's hard to listen to my dad talk about how wonderful it is for dd to have D!

My father just told me the other day that he thinks my dd should be more "independent". She already basically does ALL her own D care -- with amazing results -- but somehow that's not good enough. We're being overprotective.

It's hard to listen to a family member talk about how "wonderful" it is that my dd will have to eat such a healthy diet when the family member is eating a big sandwich and a root beer while my dd eats a carefully measured piece of bread (she has problem blood sugars whenever we eat at this sandwich shop so she brings her own bread) and cheese and a diet root beer.

When people I care about get some condition/disease I don't know much about, I try to at least read a wikipedia article about the condition so I know a bit more about what the problems are and what questions are relevant. And my parents have obviously never done even that much -- if I hear one more comment about how someone has succeeded in getting off insulin, I'll scream!

Thanks for listening. After two decades, I'm feeling pretty fed up.

Does anyone else have family members who just don't "get" type 1 diabetes?

 

Really, I think the greater rarity is to find a family what really get's it.

Sorry, you're having such a rough time with your family, but you're not alone.

 

Yep, I have some family like that. A couple of months ago we were at a get together with my dad's side of the family. Sloan wanted a piece of pie after lunch so I got him a piece. My grandmother asked if I got him the sugar free cheesecake. I told her I didn't see it, but that it was no big deal because it still had carbs in it. My aunt proceeds to tell me I should go get him a piece of the sugar free cheesecake, Again, I say it's ok, I'll cover it with insulin. Really, I'm supposed to let him eat normally...I'm his pancreas. He wanted this pie so I'm going to let him have this one. I told her I would just give him insulin to cover the pie, not big deal. (For the record, Sloan doesn't get much sweets, even before D, and when he does now, I only usually allow them with a meal.) Not even a minute later my aunt and uncle start telling this story about how they had a college girl on the bus (my uncle drives for a tour bus company--they do a lot of college trips) that week who ate a candy bar then gave herself a big shot of insulin and how she was just killing herself. I so so so badly wanted to say something. I really did. But this one time, I bit my tounge, hard! My aunt and uncle are just "those" type poeple, not just about medical things, but everything. I knew it wasn't worth wasting my breath and getting me upset about. Especially since my aunt is type 2 and was probably basing everything she said off of that. But yeah, it really bugged me.

 

I had to smile at part of your post. When Sean was first dx, I thought it would be like that. A specific math formula that would result in perfect numbers all the time. Let's just say it did not take long to discover that I was very wrong or I really suck at math because hard as I try there just isn't a perfect math equation resulting in perfect numbers.
I don't know if my family gets it. They don't talk about it. That leads me to believe that they get it but it freaks them out so you just pretend it isn't happening or they don't think it is a big deal.

 

My family get that Phillip can eat anything, but they don't understand the variability of it all. They just think his numbers should be in range all the time, and if they're not he snuck something or I did something wrong.

 

some of the smartest, sweetest, and most kind people I know do not understand diabetes and have made comments that send shivers down my spine. 'Despite wikipedia and it ability to inform, d is just one of those things that until you live with it, it is so difficult to understand it and the constraints and grueling regime. I think the fact that we continually have to measure blood SUGARS messes people up in thinking that it has to do with sugar being ingested. I'm only 8 months in and I want to shake people that make stupid, ignorant or irrelevant comments...I hope with time I can learn to deal with it better. I too hate the comments about how we should feel grateful nothing 'more serious' is wrong. I am sorry you are dealing with this. Hugs....

 

Gee, I can't relate at all. My family is perfect. Considerate. Begging to be trainined in all aspects of D-care. Fully competent with glucagon.

Oh, sorry that's my Alternate Universe family. . .

Absolutely clueless after 8 years.

Since dd pumps now, my mother no longer flinches and groans at insulin delivery time. My mother long ago said she could never give a shot.
But, I GET that she doesn't get it. She buys sugar free treats, though, and I know, in her mind, she considers them a "free food." My mom, though is fine, because she never criticizes me. She believes that everything I do for dd is necessary and she has never tried to compare dd to someone with T2. She just doesn't get it and I don't think, at her age she will.

My sisters, though, continue to bring store bought goodies to parties that have no carbs on them. They cut a hunk of some dessert off , put it on a plate and tell dd "Go show this to your mom."

They believe I am overprotective. Similar all other extended family.

So, yes. I'm right with you. I've let it go (OK- my sisters still get to me ).

I met a grandmother and grandfather of a teen T1 and they had been through training and really understood how tough it is to manage D. They've been helping their daughter care for her son for 7 years. So, these relatives do exist!

 

I don't think I've ever heard someone else say their family doesn't talk about it. My dad's family doesn't either. If I say anything they act awkward and change the subject. They stare and whisper if she tests or gives herself insulin around them. I learned really quick not to mention it. Its hard though, because I have no idea what they think. Whether or not they blame me, have the typical misconceptions, are critical of her food choices. Probably all of the above. We have really pulled away emotionally and spend less and less time with them.

My mom has a type 2 insulin dependent best friend with all the problems of unmanaged D. So on that side we get inappropriate horror stories and comments, even though they try to understand and ask questions. That doesn't bother me as much, because I agree that people who don't live it, just can't truly understand and that is not the same as being judgmental and intentionally hurtful.

MY DH's family has a number of kids and adults with Type 1, so its a whole different world when we're with them. I'm grateful for at least some family who "get it". Its a wonderful support system.

My DD acts entirely different about D, food and her care with each of our families. Its sad to watch her be secretive and guarded, when in her everyday life she is so comfortable and relaxed around friends and my DHs family. She doesn't feel accepted or understood by her family. That breaks my heart.

So what does everyone else do and say to their kids when they're old enough to understand their own families don't understand or even judge them for having diabetes?

 

my ILs get it only because FIL has D as well.

As for others, you can't cure stupid. I find that with D, among many other things, that people listen to what they hear in the media and believe it to be true.
So hard to just smile and say whatever, trust me, I get it

 

Yes we do!

 

Some get it. Some don't.......

But I have more problems with scout leaders, coaches, teachers, etc...

 

I'm sorry. It can be frustrating.

I don't think you can do much about it, unfortunately, except getting ear-plugs.

I get the same from my in-laws, about how it's better to have D than other disease. Yeah, sure, but it still sucks rotten beans sometimes.
My FIL is an expert at telling horror stories...in front of my son.

Hang in there. At least we understand it here.

 

I guess I am lucky. My family kind of get it. But to be perfectly honest, it is not something that we talk about much as a family, not because they don't care, but I truly believe they 'forget' Tyler has D.

And in a way, I am grateful for that because it means we have achieved what we always said - D does not define who he is. Sure, there are moments when it consume a family get together, but even extended family don't notice anymore. Family members always ask how our endo appts have gone, but we don't dwell on it.

And while they will never know EXACTLY how it feels to live with a child with D, as long as they allow me to cry, laugh, whinge and whine about it, then that's ok with me.

 

I feel the exact same way. Unless you live with D or are the parent of a child helping them with their diabetes, one just doesn't get it. And I hate the "getting off of insulin" line. I want to tell them, "Well everyone is on insulin. Your pancreas makes it or you have to take it via injection or insulin pump." So when your body stops making insulin and you don't need to replace it then you can tell me about getting off of insulin."
And about the math, yes I use math to help me manage my diabetes, but that doesn't mean I am not thrown a curve ball sometimes and what should worked doesn't. Diabetes is always throwing curveballs, groundballs, fastballs, etc. I just wish it was more predictable. For me it never is. We all just do the best we can.

 

Or how about when extended family morons make comments in front of your child on how their great uncles cousins brother lost his foot, eyesight, legs, etc..all due to diabetes and they tell you the horror stories...Really?? OR on holidays while slicing dessert announces OUT LOUD..."oh Amanda you cant have this..you have diabetes"....
Im not one to sit back and say nothing.....Im her pancreas and yeah..her voice too!!
However...I did get a giggle one day in the supermarket when a lady said to Amanda.."I love your purse"...meaning her insulin pump pouch...

 

I totally get it!

Ya know, though, before 2/13/09, I didn't get it either. My niece was dx'ed at age 2 (she's 17 now). While we weren't super close (in another state) and I didn't see the day-to-day stuff, I was clueless. I thought type 1 d's got low blood sugar.

My office next-door-neighbor has a best friend whose son was dx'ed about 6 months ago. I was telling her yesterday about a funny call I got from ds who was telling me about his lunch and what he was about to dose (he said his bg was 42 - I said "huh?" - and he said "oh, wait, I mean my carbs are 42, my bg is 91" - oh, much better...). She talked about her friend and how they're not feeding her son well. I mentioned that it's ok if you have insulin blah blah. She smiled and said she really thinks he's type 2 and not type 1 (like the endo has dx'ed). OK, whatever...

In fact, I'd even gone through EMT training and worked admin in an ER setting for 5 years and was completely useless when ds started getting sick. We were on vacation, so I didn't have access to the internet. I vaguely knew he was showing signs and symptoms, but had no clue what dka was and that is was coming on us like a freight train. I was smelling his breath and giving him sugary soda to make him feel better - duh!

My point is, this is a goofy condition and unless you're living it day in and day out with every goofy stupid "WTF?" high and low you'll never get it. I kind of like to think it's our own little secret knowledge that only we get.

The one thing I can say is that when I don't understand why someone is doing what they're doing I'm going to ask questions and not assume I know what they should be doing. Having a reality that is one where I give my son cookies if he just absolutely doesn't finish his dinner makes me look at other people's lives and wonder what their craziness is. I have a friend whose 2 kids are both bipolar and friend whose son has cystic fibrosis and another whose son is on the autism spectrum. I have a friend whose son went through leukemia treatment when he was 4 and another whose son has migraines. If nothing else, this condition and our life has made me inquisitive and respectful of other people's craziness. I'd much rather be me than be self-righteous and opinionated!

 

VERY WELL said! I agree 110%.

 

This is a very good point. Very well said.

I sometimes even find myself judging other d parents, because they don't do things exactly like me (in my head only, but still)

My family gets it. They are amazing. My husbands family gets it too. Very supportive. The part that drives me crazy is that dh's dad is type 2, and though they'll count ds's carbs and take care of him, they won't understand that those same carbs are the same for t2. He still has sugar free pie, canned fruit, etc,,,, IT STILL HAS CARBS!! I've shown them hundreds of times that "sugar free licorice" has just about the same carbs as real licorice. Or granola bars, or ice cream.

OK, vent over. keep on keeping on.

 

My family gets it pretty well but my husband's family, that's a different story.

They believed that you could get insulin in the form of a pill and that we were being lied to when told it's only available via injection or a pump. They found a doctor in a small town in Mexico and wanted us to take David to see him because he was curing people of all Diabetes and when we refused said that we weren't doing all we could help get him cured. They never ask how he is doing and don't get all about all the ups, downs, and worries that come with this condition. Ughh, they just make me so mad

 

Sometimes I think if there wasn't such bad info and so many people out there selling stuff about type 2 diabetes this wouldn't be such a struggle.

It's not just that people confuse the two types, it's that our understanding of diet is so darned warped by all this, and diabetes (type 2) just gets tangled up in all that. I don't see how sugar free pie is good for a type 2 diabetic, either -- hey, you like it, that's fine, but it's not a HEALTH food, for crying out loud, and that's what it's sold like. Type 2 diabetics didn't "cause" their own diabetes either but if we act as if they did we can sure guilt them into buying a lot of books, products and programs (or scare people without diabetes into buying them). This all bleeds over into our lives.

Sorry for my own rant, but I just had a tense visit with my folks, they were all over Dr. Oz (however you spell it) and how wonderful he was. I told him I wasn't a fan, and neither were some folks here, and they got all "Yeah, like a bunch of people on a forum know more than this nationally syndicated doctor with a book out." -- to be fair they were talking about diabetes in general, but I think this general mindset that if it's sold on Amazon and has a segment on the Today show and there's a special at the store then it's GOT to be true doesn't make our lives easier.