The half-experts

Gina sent me a warning that the post below might set off a serious unkind reaction from people who might think I was talking about them. Gina, if this is not an accurate paraphrasing of your warning, please let me know so that I can fix what I wrote to better represent your words.

I am heeding the warning in one way, by I hope clarifying what my post below is about so that people are not hurt, angered, saddened, outraged, or otherwise experience a negative emotional reaction to my personal experience.

I AM NOT TALKING ABOUT ANY PERSON ON HERE IN ANY WAY IN THIS POST.

I DO NOT KNOW PEOPLE ON HERE LIKE THAT. I DON'T WANT TO OR LIKE HURTING PEOPLE'S FEELINGS, EVER.

IF YOU ARE OFFENDED OR ANGERED BY ANOTHER PERSON'S EXPERIENCE...

IF YOU TEND TO TAKE OTHER PEOPLE'S FEELINGS ABOUT SITUATIONS PERSONALLY, PLEASE DO NOT READ THIS POST. I HAVE BEEN WARNED THAT IT MAY OFFEND PEOPLE, AND I DO NOT WANT ANYONE TO HAVE HURT FEELINGS ABOUT THIS IN ANY FORM.

I AM TALKING ABOUT TWO PEOPLE IN MY TOWN. THEY LIVE IN MY TOWN AND GET ON MY LAST NERVE. THEY MISREPRESENT T1 BY HABIT!!!! IT DRIVES ME CRAZY, MAINLY BECAUSE IT IS PATENTLY UNJUST.

SO ARE WE AGREED, I HOPE AND PRAY, THAT PEOPLE WHO READ THIS AND RESPOND WILL DO SO IN THE SPIRIT OF FRIENDSHIP?

ARE WE ALSO AGREED THAT IF SOMEONE READING THIS HAS A TEMPER (LIKE I DON'T LOL) THAT HE OR SHE WILL NOT READ MY WORDS?

WHILE WE ARE AT IT...CAN WE AGREE TO BE NICE?

THAT HAVING BEEN SAID, HERE IS THE POST BELOW:

I AM TALKING ABOUT TWO PEOPLE THAT I INTERACT WITH IN MY TOWN. THIS POST IS NOT WRITTEN TO HURT, OFFEND, ANGER, EMBARRASS, ALIENATE ANY PARENT OF A TYPE 1 ON HERE OR ANY PERSON WITH T1 ON HERE.

 

 

Okay. I know that there are a lot of parents of T1 people on here. Please, any parent of a T1, try to understand that I am not talking about all people who have close ones w/T1, only the ones that never bothered to check their facts.

Parents of T1 are, mostly, heroes to me. T1 people are, too.

Having said that, I am frustrated and need to vent. There's a person around here who is afflicted with a child with T1. I say afflicted because she plays the martyr and moans about everything that her son goes through as if he did it on purpose and that it is all about diet and also, that whatever physical thing has happened (severe low blood sugar, severe high blood sugar) is something that he has actually done TO her. She at least admitted, for a second, that she didn't know what it was like to live as a T1 (and some people without T1, I think, could get pretty close to empathy about T1, especially the ones who bother to learn and don't take every fluctuation as personally as if it were a personal attack or a reflection of their ego). So she's talking about how she went to the dr w/her 17 year old son (I think he's been T1 for around two maybe three years now) and evidently immediately blamed his "bad results" on him. Talk about cruel. He's in the throes of adolescence, for God's sake! That whole never good enough thing...

It is hard for me, though, to get her experience as being a Mother with a Son Who Is T1. I think there's some residual anger because it wasn't always healthy the way some things were dealt with related to my T1 in my family. Seriously. If I wasn't crying after every doctor's visit because of the way the doctor was.......and I worked very hard back then when I was a kid. I worked too hard, actually.

The thing that bugs me is that she is playing the victim about her son and when she opens her mouth, out comes a series of very revealing false statements about what T1 actually is. She speaks false things about her son's "illness" and makes it sound as if he doesn't do anything at all and that it's all a matter of him being some sort of good or better person, and then he'd just be healthy all the time, but it is clear that she doesn't even know what healthy is, any more than she knows anything, really, about T1.

So she's one example of a half-expert. Everyone who listens to her believes her words as if they are the gospel truth, and it makes me insane because she is very ignorant and thoughtless. At some point, I wish she would open a book and read. It might make her a little less cruel to or exploitive of her son.

Another half expert that makes me insane is this woman who is T1 in my town. She's just as nice as she can be, but she talks about "abusing candy!" And how candy causes her to feel bad...and it's like when she was diagnosed, she listened to some doctor who knew absolutely nothing at all about T1 and just never bothered, ever, in the several decades since, to actually learn about her illness.

Both of these people talk as if they are experts, and people assume they are experts, and they spread misinformation and lies. And I think to myself that this is completely wrong...for people who should know better, who actually live this disease, to be so ignorant...it kills me. I think about the stress that Mother of Son has experienced, and I think about how much of it is actually just her using him.

People are human and bound to errors and mistakes, me as well as anybody. It just drives me nuts...month after month after month and on and on the half expertise and blathering continues...

Thank you to all T1 and all family members of T1 and all friends of T1 who really do live this disease. Without you, there'd be little hope of anyone with T1 having a full healthy life. Your effort and empathy is beyond price or valuing. It's life sustaining, life affirming, soul saving, life saving, loving, beautiful...thank you.

I really feel for this young man and can somewhat relate. One of my birth parents (I say that because they are biologically my parent but did not raise me) had a Type 1 father and because of this was sure that they knew everything under the sun about T1. This person was always wrong.
I got a lot of talks about how I could beat this if I was mentally stronger or if I just worked harder. I was told to go outside and  exercise more (keep in mind we were in the desert where the temps can easily get to 115 F), eat less, pray for forgiveness, pretty much all the  stereotypical garbage you can think of. It was confusing as a child to be told one thing by doctors and another by someone that I loved and admired. One Summer I went into DKA and stopped breathing for almost a minute. I had to be resuscitated (defibrillator and all) and woke up with a tube down my throat. It was one of the scarcest experiences of my life. This is when I realized that this person was a lost cause so to speak, there was/is nothing I (or my doctors) could do or say that would change their mind. I am just so thankful that my time with them was limited each year otherwise I may not be here today. 

You mentioned that this young man is 17, to me that is the brightside. He is only a year or two away from college, and if not college at least a legal age where he has more say and control over his medical affairs. I can only hope that that he knows that none of this is his fault and that there are others that struggle as much as him. Maybe he could even join us here at Juvenation.

I don't think some parents understand how hard it is on T1 children emotionally. I already felt bad enough when my sugar was high I didn't need someone else to be disappointed in me as well. I thank the divine everyday that I had my grandparents to look after me, love me, and support me no matter how bad or good my sugars were.

I hope that this kid has some support because I don't believe his mother is helping him. I suspect that some of her motivations are not wholesome, but I also think that everyone has a chance and possibly can grow into outside circumstances, and it is her son...and I guess I feel like I would react in unpredictable ways to a child I had brought into this world becoming a T1 as well.

It almost sounds as though you may had endured a version of scientology. I hope not. I really tie the emotional context above to that monstrous creed...eh...saying that, please no scientologists or other derivations of pray yourself off of insulin use are not offended...

Although I will say that if there is someone on here who thinks that prayer will take you off of insulin, and you are truly a T1, well...

$%%^ @^@#(~~!!!

:-)

That is better than saying it out loud, and besides, Juvenation would bleep it out...it would incur The Asterisks...it's too much of an asterisk risk...

Happy Vegan, do you think that this post sounds like a personal attack on parents of T1?

That's a little bit of a side question. I am sorry that you endured that experience. I am glad that you also had someone who was loving and supporting as well.

I like to think I would handle having a child with T1 with dignity and grace, but the fact is, I am very emotional...with almost everything, I feel it before I think it. So I would probably behave poorly. Not that being emotional is also necessarily behaving poorly...it just is for me.

I appreciate you sharing your experience. I think my mother and father did the best they could. I had a lot of things that many people never did, and I am grateful for their hard efforts over years to sustain my life, especially my mother. If it weren't for her, I don't think I would have one quyarter of the skills to handle T1 that I am finally using today. At the same time, it was often emotionally harsh as well. It's hard to separate the harshness from the good moments sometimes, and it has been my experience that harsh things tend to overpower kinder and gentler things...well, they do when I have amnesia. They don't now. 

I think it was mostly terror...I felt terror; my parents felt terror. The ironic thing is that while I believe our terror was the same, we often ended up at opposite ends because of it. At the very least, I learned from what they learned, intellectually, how to care for myself physically. I didn't pick up on how to care for myself psychologically or emotionally because I learn such things very, very slowly. And back then, when I was first diagnosed, T1 was treated as a synonym for blindness, dialysis, amputations. So no wonder there was terror in everything. But it wasn't just about T1, either. T1 was like a lens that magnified some pre-existing (like the adjective, lol) conditions of all of us, established before we even all came into being as a family.

Okay...I've gone on long enough.

Thank you for responding Happy Vegan. I appreciate it.

As a parent of a T1 daughter, I do not feel like you post was an attack on us (parents). In fact, I feel like I learned something. I certainly do not go to the extremes you describe of the mother of the 17-year-old boy -- and I send him hope and positive karma that he can persevere and get through that. But... it did make me think about how I do react to things related to her Diabetes. I am also very emotional -- and I react to things emotionally. And this is a terrifying disease. My daughter is super responsible for a 10-year-old and has developed amazing coping skills, but she does tend to feel like a failure when her numbers aren't good. I should be able to help with this -- to not focus so much on the numbers, to point out all the great things she is doing, to make sure that I support her, not that I feed into her fears and anxieties.

Thanks for the reminder! This is not easy on any of us, but the more we learn from one another, the better off everyone will be.

 

Hey Chris,

I am glad that it didn't come across as an attack because it was never intended to be one...so I am relieved.

It seems to me like, after reading the posts...that there seems to be an emotional honeymoon of sorts as well...like the earlier years before (if there was a before) adolescence seem to carry with them a T1 that is not as emotionally harsh...and then when adolescence hits, T1 can become not only different physically (no kidding on that one! lol) but also emotionally...

I can say though that if my experience gives any hope, adolescence does change into young adulthood and eventually, habits evolve as well. Sometimes, adolescence hangs around longer than it ought to...not that I would know anything about that... lol

I can be pretty ignorant of what a parent of T1 is going through; your experience with T1 is entirely different from mine...I think I have tunnel vision...everything from a T1 alone point of view, if that makes sense. I try to imagine how I would feel caring for someone and then finding out that this beloved person in my care is T1...how would I handle it...

Being emotionally-based, the thought scares me, frankly. I see everything through feelings first. It drives some of my friends and family a little crazy, mainly the intellectually-based people...they tend to sense things as 'in control' or not. And never the twain shall meet...I think though that people are put together, not happen to be together, and there is some reason that they all come together into one group...but I'm getting a little new age saying that.

I like to think that there is a reason why the odd collection of personalities in my family came together like they did...

Your response makes me think about whether I practice enough compassion for all people who live with or in T1. Thank you for responding; you gave me a lot to think about.

 

As a former teen w/T1D, I have say that there are thing that struck a cord with me. 

Diabetes is a condition that needs constant attention, education, treatment, management, communication, support and acceptance from those close to you to be supportive. Otherwise, you are not supporting the T1D, only hindering their growth, emotionally, physically and as a diabetic. 

After 40+ years of dealing with the big D and learning, getting abused, leading, educating myself and others about D, I feel good about it now (sometime is still bites!) and savor the support others around me.

Love 'em and support 'em, and they will grow.

Stephen

Yeah not offended either and my feathers can ruffle easily its cut and dry about someone you know. I am emotionally driven too but I dont let Riley know when her numbers are not good that I am more confused as to why than mad or anything. If I was mad it would have to be at me right now she only eats what I give her. Anyhow I do feel in ways this was done to me as well as her but I know she has to live with it her whole life. Maybe its because I have the twins with their own problems and now adding her with D1 its a lot for one momma to take on. I know my biggest issue with it all is I cant kiss the boo boo and make it go away. I do feel bad for me but I would feel bad for anyone in my shoes. Tho I am learning to cope with this and in the end will be fine her d1 will be with her for life. I wont feel bad forever. We as a family will get stronger and be able to deal with our cards as they were dealt to us. For now tho I will whine a little here and there. I dont see it compared to that woman you wrote about tho. I might not do it all right but never in a million years would I bash my kid for not having good numbers. Or blame them for having d1 or have the stupidity to say SHE did it to ME. That makes me wanna vomit. It just proves some people should not have kids.

I really appreciate your posts and responses on here because they make me look at things very carefully and realize how much I don't know about parents with T1's struggles. I'm up in PA right now visiting my mother. I talked to her about how she felt with us (me at 5 and my bro at 15) as T1. I asked her if she felt guilty. She said she did and talked about how she felt a lot of the time and that from her perspective, a parent should be able to take care of kids, and that she felt horrible because every time the blood sugar was bad, she had learned that it did damage...

It hurts me that she felt this way (I hope past tense) or that any T1 caregiver would feel like this. I would never want her to feel like this, you know? I feel frustrated at myself sometimes, especially now that I am (a blessing in disguise) having to check 10x a day. I see the post meal spikes...and I think, "I ate a half. a. sandwich. A half sandwich!" It's like every meal creates a tiny fire that has to be put out. If I were a parent, looking at that change, and knowing I am as feeling first as I am, it would be a constant battle to maintain calm. At least being in the "driver's seat" I have the sense of...I don't know...the source of the issue at hand.

Your thoughts help me a lot. I am glad that you see what I know to be true. T1 has, without a doubt, strengthened relationships (mother in that case definitely) in my family because I think she looked at it and just decided it wouldn't affect how she cared about us, if that makes sense. It sounds a lot like what you are doing, for what it's worth...

I wrote something a line in my blog to help me get over the guilt and worry of Riley being high. "I am a mother not a pancreas" all I can do is my best and hope its enough. I am a mother I am not incontrol of this even with all the tools given to me to help in her care. No matter how well I do I will never and can never be her pancreas. If I ever write a book that is what I will title it tho I doubt I ever will.

That sounds like a wonderful line...

I like that Jessica !