What is it that you wish they could grasp, that they just don’t seem to understand?
What is the one thing that you wish they’d really hear?
The one thing that would take down a big barrier between you? Make you closer? Better allies?
For me, I wish my family would understand how it consumes my time, the hours I put in every week thinking, worrying, testing, logging test results, counting, planning, correcting, dealing with highs and lows, reading, researching, exercising, filling prescriptions, making medical appointments, on and on – it consumes my thoughts and consequently, yes, if anyone asks what I’ve been up to, I will talk about it – not because I’m weird or obsessed or losing it, but because that’s what it takes to stay healthy, to keep my eyesight, to keep complications at bay, to avoid having to call 911, to keep my feet and my kidneys in working order – to be able to LIVE I have to put a lot of concentrated thought and effort into dealing with diabetes.
It’s not like I can just take a pill and never think about it. It’s a part-time job that’s never going away, whether anyone likes it or not.
That I did not do this to myself, because I am a genetic D-saster. And that despite the fact that we have family D-genes in common and so many family members affected with it, people still deal with it (or don’t deal with it) like it was grandma back in the 1970s and mum would make her a ‘diabetic’ portion of cake or dessert ‘with no added sugar’.
I had a car I was fixing up. The engine was really really bad, but I still got the car painted. It LOOKED great, but didn’t drive that well at all. Who knew when looking at it?
I wish certain family members would agree to never get me another diabetes cookbook that has reduced sugar low fat high carb dessert recipes. They all know I’m a good cook and I can deal with it, it just seems like punishment.
I wish they would understand that sometimes I don’t feel well and it may take up to 30 minutes before I start to function well again. I wish they would give me time to deal with whatever I need to deal with. Just the time without pushing me to be better faster. I can’t make the insulin work faster. I can’t make the food work faster either.
I wish they could really know what it feels like when my blood sugar comes out of left field (e.g. waking up super low or a really high number after I’ve know I’ve been careful). I wish they could know what it feels like physically and emotionally.
I just wish they would let me EXPLAIN to them about diabetes in more than ONE SENTENCE before the subject changes. It hurts my feelings so much it’s like they don’t care.
Please don’t buy weird no sugar added food that I won’t eat because it has more carbs than regular food. If I say I need to eat something please don’t ask me to wait. And please don’t buy me anything that says “How to cure your Diabetes”
I would LOVE it if my family could see me eating a dessert item and not say to me, “Are you supposed to be eating that?” It makes me want to explode. They don’t know what my blood sugar is or how my body works. The pump is such an amazing piece of equipment, we can do so many more things than we could before. Just because I’m diabetic, that doesn’t mean that I’m not fitting a half of a candy bar into my daily carb amount. Geez!
I wish that my elderly relatives would stop policing all the food I eat…specially in family gatherings…and to stop making me try all those bitter herbs to "cure"me.
One more for me: I wish people would stop assuming that I must be "in denial"and need to be talked to like I’m an infant, just because I am struggling with control. I’m not an idiot; I’m not a child; I’m just struggling with control.
Why is that so hard to understand? Diabetes is difficult. Insulin resistance makes it more difficult. Things happen in my body that do not follow the “diabetic script” that some people think I should be able to follow effortlessly with no problems.
I finally have a doctor who understands (to paraphrase): *You’re injecting a hormone subcutaneously. You have insulin resistance, PCOS, thyroid disease, adrenal hyperplasia – and you’re in peri-menopause. We can’t always predict with precision what a certain dose will do at any given time. It’s going to be difficult. You’re going to have some highs and some lows. As you exercise more, cut carbs and lose weight, we’re going to have to tweak your insulin. You may still have highs and lows, despite our best efforts. Call me. E-mail me. This is going to be a work in progress."
But when I try to explain this to my sister, she won’t listen or can’t hear me – she’d rather assume that I’m doing something wrong because I’m “in denial” about my diabetes and that if I’d just “take better care” of myself, all the problems I have with control would fall away miraculously. Arrrrggghhh!!!
I can’t talk to her or anyone else in my family about it. It makes me crazy that they always want to blame me for hypos or hypers, like somehow it’s all my fault, but NONE of them want to actually educate themselves about what’s going on with my diabetes, because it’s boring to them. They’d rather just subtly or overtly blame me and leave it at that.
what for? To get more sympathy? and the more you tell them how miserable it is having this Krappy Disease, just scares them, that they or their kids might get it too…
Sharing your Miseries is not in the best interest of others… and being in someone’s face about it , isn’t either…
even our Taking out our Test Meters in front of others, let alone pulling out a Insulin Pen or, syringe or Looking down and Exposing your Insulin pump is enough to make them feel funny and scared…and shows one’s weakness… In most eye’s we’re a sickie an best to try to keep it to ourselves as best possible…and show them how well we can handle it thru example, for if and when on the them or theirs gets it…
and the odds are pretty good one of them or The kids will…
Nah my family and friends tend to be very supportive. My oldest daughter knows I must test myself and take shots so I don’t get sick. My wife understands most of my needs and my friends are more likely to stand up and say something to someone who makes a negative remark then I am. My friends and family may view it as a challenge but not a weakness. Could be because I have friends who have issues such as MS and HIV. But what doesn’t kill me makes me stronger.
Hmmm… I would have to say that I wish they would stop saying I am testing too much, and that the other members of my family don’t so why am I making such a big deal about it??
What they dont seem to understand is… the other members of my family that have diabetes…are NOT managing it…they are very obese and unhealthy, infact I just lost my uncle to complications of diabetes on xmas day!!!
I care about myself and I MUST test often because MY diabetes is different…so different that it even puzzles my care team sometimes.
I need to test often, because I care about my health, I read every label when I shop for groceries because I care what goes into my body.
And I am not going to eat that fatty greasy piece of ham just this one because once wont hurt me, and will make YOU feel better.
And if I get a little grouchy or forgetful…if you cant handle it… then just leave me alone!!!
WOW was that a rant or what??? LOL
I love my family, But i wish they would stop saying, “I understand” And “If i had Diabetes i would handle it differently” Because i don’t think you can truly understand what we go through each and every day until you live with it. And you may think you would handle it so well and be right on top of it, but guess what they dont have it and they dont have to deal with it and try to take care of it day in and day out with out a vacation from it. Wish there was a good way to take a vacation from Diabetes…
My sentiments exactly. Having understanding and supportive friends and family is so important, but I do not believe the fact that I have diabetesshould garner any special attention. Support is required for all aspects of life, not just (or especially) diabetes. The reality is that the diabetic is the only one who can take control of their disease. I would prefer to do this on my own and not allow it to become the focus of attention for others - that woul further hinder my attempt to have some normality.
To have a spouse who is not understanding and does not want to understand is so dejecting. Since his former wife was treated for a hypoglycemic condition but, died from CHF you would think he would care. All I have ever asked of him was to know the S/S of hypo and hyper glycemia. My daughters are aware and supportive and are both Low Carbers and one has been disgnoses with D. The other daughter has an A1c done every six months and to present shows no problems. However, his family continues as in the past with a diet of high carbs and fats. So basically, I have one sided support from family over 200 miles a way. So what is the answer? …
