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Do you feel like you scare away your friends?

Discussion in 'Parents of Children with Type 1' started by kittycatgirl, Aug 2, 2006.

  1. kittycatgirl

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    Hello,
    I was just wondering how everyone was feeling about their good friends? My daughter was diagnosed in January.... she is doing well and life almost seems like it is back to normal... or as normal as it can be. When I talk to my friends or get together socially... it almost seems like I should avoid the subject. I don't want to scare them away or get into it to much. I don't want to be the kind of person that focuses only on this one thing. But my daughter's life is at risk every day. She lives with this 24/7 and I always have it in the back of my mind. What is her BS... when does she need more insulin.... We are doing a local walk to raise money for JDRF, so I sent out a few emails. My friends are being very generous. I have a hard time explaining to them how serious this disease is. I guess I was just wondering how much is to much to share with your friends? Last year if someone was talking to me about this... the needles and blood test... I am not sure I could have really understood. I guess I just needed to vent. What is it like for you and your friends?
     
  2. georgia

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    HI
    We are only one month into this but I can relate. My friends ask how she is doing and I lately have been saying great, I mean she is feeling a lot better than before diagnosis. I think that is what they"want " to hear, not really the details of shots and blood tests. I've tried to explain what diabetes is and how we have to take care of her, and I mostly just get reactions of shock and that is not really what I need. I get the comments like "Ya know there is insulin that can be inhaled" or " she'll probably grow out of it" or "how did she get it".
    Those don't help either. Diabetes and Amalia's care is at the forefront of mind, always, minute to minute. I know not everybody wants to talk diabetes, and I don't really want to either. But if we are at the pool and can't stand around socializing, I need to be watching her and making sure she is doing okay.
    I probably need to get out with some friends away from the kids nad be normal. but time was hard to come by before diabetes, now it is impossible to get away. My husband and I work opposit hours so when he's home I want to be home, and well obviously babysitter are out for now.

    we'll see. I don't know if anyone can really understand unless they live with it too.
     
  3. bethdou

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    they don't really get it...

    I have some really wonderful friends who have been supportive of me, and asking how she is doing and so on, but I'm not sure they really understand the seriousness (is that a word?;) ) of T1D. One of my girlfriends has a dad with T2, and he's had quite a few complications, but he's not insulin dependent, so it's not really the same......but at least she gets what the future can hold for Meghan.

    I am doing a fundraiser for our JDRF walk team too, and I sent an email out stating "she faces 6-12 finger pokes and 4-8 shots of insulin a day just to stay alive", and listed some complications...it shocked some of the people I have sent it to. I have had a few people say that they didn't realize that her diabetes "was so severe"....so I take a few minutes to explain that T1 is always "severe" and how it's different from T2. That seems to help.

    Overall, I am very blessed to have friends who don't seem to be scared away. We have been through lots of other turmoil together (death, divorce, infertility, cancer, pretty much you name it) so I think that's why they are supportive. Now parents' of my daughter's friends?? That's a WHOLE different ball game - some are wonderful and some have been downright nasty. Different rant for a different thread, though! :)

    Good luck - I guess this is a way to find out who your "real" friends are. I suppose I would just try to gently educate them about it, without hammering them over the head (even if you want to:D ) until they have a better understanding. Offer them info, and if they are receptive, offer more - if not, just smile and say "We're fine, thanks" and let them go......and focus on you and your family. We have met some great new friends through JDRF activities here, and that might give you some new outlets with people who do "get it". Happy walking!
     
  4. jeep_bluetj

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    I'm an engineer, and a guy, so I may handle those feelings a bit differently. But both my wife and I are matter of fact, and answer any questions truthfully. We're very adamant with those that say "he'll grow out of it" or the inane "ate too much sugar." With anybody new, we always give the quickie: "It's an autoimunne disease, where his own antibodies killed all of the insulin producing cells. He'll never grow out of it, and it's not caused by diet. We take care of it by injecting the insulin he no longer makes himself." Some have been suprised of the seriousness of diabetes, but we just let them know how serious it is.

    Matter of fact works. (Just like when your kid asks about where babies come from). All of our close friends 'got it' real quickly. Even to the point some have become babysitters. None of our friends was put off by it at all.

    Curtis himself is a big help. He's also very matter of fact. He'll show off the pump, he'll let others watch him test, he'll explain to other kids what he's doing and why. He has no shyness about being diabetic. Kids are good, they pretty much figgure out this is a normal part of Curtis's life and don't care - they're more interested than anything else. They ask questions like "does that hurt?" and "How often to you test?" Adults can be a bit more of the "ate too much sugar" variety. So I'll always patiently explain what T1 really is. I'm much more of a hammer on the head person :) I try to never let anybody walk away with a misconception about diabetes.
     
  5. sheila

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    Don't forget the "just don't give them candy".....:mad:
     
  6. selketine

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    There is a rather amusing (or jaw-dropping) thread on the ADA forums board for Parents of kids with type 1 where the BRIDE at a wedding reception actually berated her own neice (who is a child) for eating a piece of birthday cake. She told her in a loud voice that she needed to groe up, start taking her diabetes seriously and stop compensating for it with insulin.

    I think eventually your friends see you and your child handling the diabetes well and all the work that goes on isn't obvious at all. I'm not sure that is a bad thing but it helps to have friends that know what sort of stress it is. I think all of us here get it immediately cause we're all doing it and I'm not sure that friends who don't have children with diabetes will ever quite understand.
     
  7. EmmasMom

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    I have been having a very difficult time with this myself. In the beginning it was "crisis mode", and everyone was so shocked and supportive and wanted to understand. But because it's not their life or their child they can not understand. They don't live it, they don't feel it, they don't know how it consumes your world.
    My friends ask how she's doing and I usually just say she's doing pretty good. If I get into the details of how life really is at our house, the stress, the lack of sleep, the financial burden that all comes on top of watching your baby suffer and get poked all day. Etc., etc!!! Either they feel uncomfortable, or they feel sorry for me, which makes me feel uncomfortable. It's a hard thing to know what to say and to whom. It has changed my friendships a lot.
    Just last night I met some friends at Starbucks. There was a lot of talk about the usual stuff; jobs,(don't have one anymore), shopping, (rarely do it anymore), a new car someone wants,(who cares), $$$ hair cuts and where the best place is to get great highlights,(love it, just can't afford it right now), one friends little boy who keeps having ear infections,(a bummer, but pretty easy to fix), another who's daughter just had her tonsils out,(yuck, but she'll be all better in a few days). The conversation was pretty light and I threw in few comments about Emma. At one point after MORE taking about shopping I half jokingly said, "yeah, used to worry about wanting great clothes, a better SUV, or bigger house, now I just want to be able to afford a continuous glucose monitor for my daughter."
    Lets just say that dried up the conversation pretty quickly. It was not directed toward them, it was just a statement about MY life. But it was awkward. Then, one friend who always says the wrong thing said, "well, we just have to play the cards we're dealt" I wanted to slap her when she said it (and I still do). I wanted to say, well I want the healthy kid, shopping all the time, self absorbed, new $150 haircut cards. My cards stink!!
    Like I said, I'm having trouble in this area:). Sometimes it all goes smoothly, sometimes it just highlights how much my life has changed. Either way I'm grateful for the friends I do have. Maybe someday it will be easier.
     
  8. allisa

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    Oh Amy...I could have hugged you for your response.....

    I feel that way soooo much and it is REALLY hard....because I don't want to be "the bummer" ...but a priority shift has defintiely taken place within me.

    There was another thread here a few weeks ago very close to this subject and someone had metntioned "cleaning out the closet"...there are some friends who will be fabulous and some who will say things like your friend about being dealt the hand you were dealt:mad: they need to be "cleaned out"

    I have drifted from a couple of friends for this reason. One who told me "isn't it always SOMETHING" after hearing my news....she understood becuase her kids had strep that same week:mad: The same "friend" reminds her kids to eat their veggies so they won't get diabetes like Ty did....and when I explained that veggie consumption has NOTHING to do with it...she agreed but said it was a great way to get her kids to eat them ....sure ....use my son as an example of WHAT NOT TO DO even though HE DIDN"T DO ANYTHING !!

    I do have a lot on my plate...single mom, working full time, 3 kids, one with D, one with Down syndrome & Autsim.....I know my circumstance is unique and others couldn't fathom.....that's why I get so many "God only gives you waht you can handle"....ggrrr.....could start a whole thread on that quote alone....I have on other DS and Autsim forums !! LOL

    I think if you are lucky there will be a few close friends with whom you can confide and cry on their shoulder and then there are the friends who get the automtic reply of " all is fine, thanks" ....because that is all they can handle or really want to know.

    But it is also important to remember that your friends problems are just as important to THEM. If you want them to be open and supportive to you, they also need equal support back....that doesn't have to include the on-going problem of finding the right hairstylist !

    A balance needs to be found in crisis mode, in friends, in priorities and in patience.
     
  9. Tracy B.

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    My friends will ask me about it, but I think it is just to be nice. I can explain it to them until I am blue in the face and they will never understand it becuae they do not live with it. I do not think anyone will understand unless they havea child with diabetes and deal with what we deal with day in and day out.

    Some of my friends really do not understand because they offer things that Logan should not have. They just don't get it. I find it very hard to go anywhere because of this reason.
     
  10. Tamara Gamble

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    Amy, you are hilarious. It's true though. I sold my suv got an old minivan. Selling both horses and left my paying job. Could care less about most of the things my friends continually talk about sometimes. My friends hung in there but they can't comprehend. The one that bugs me is, " Your retired now, how can you be tired. Your home. You get to do what you want." I guess to sum it up. They are clueless. My prayer for them is that this disease never finds it's way into their life. I'm 38 and far from retired. I think it's just ignorance, I don't think anyone who doesn't have someone in their life with this disease can understand. The just don't eat candy thing just goes to show you how little they know. We get it all of the time. My own sister in law yesterday said," Well how much longer until Tyler can get that pump thing off of his body. I mean really, I know people who use shots or change their diet and out grow this thing." I was gobstopped. Then amused really because she tried to argue with me about it. Sometimes you just got to let it go. You will get through this and make new friends in the proccess as well. Denial is deadly. Talking about all of this openly is healthy for you and your child. It decreases awkwardness and help him/her accept what they have been dealt in a healthy fashion. I wouldn't worry so much about what others think. You and your family need support and your child needs to have the opportunity to feel "normal" again. Not strange or different. If someone can't deal with it then shame on them. We made a big fuss about how proud we are of Ty for grabbing the bull by the horns so to speak. We do everything in public wherever we go. We want him to feel that the sky is the limit, this is just a glitch. No big shakes. And don't be embarrased to ask anything like this. Unfortunately all of us have been through this or are going through this. Hang tough! Keep writing, keep talking, educate, educate, educate. One more thing, when my son goes to stay the night somewhere and I lay out the emergency information for the family they become a little overwhelmed, a little less clueless and a little more sympathetic. Don't scare them or anything but put it in perspective. Good luck! God Bless! Tami
     
  11. Kelly

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    I have left many of my 'friends' for this reason, they don't understand, and really don't want to. I hate being asked, hows Anastacia... only to say 'she's fine thanks' even though she aint, just cause thats what they want to hear. If I do go into details they drift off into space land, change subject, or make stupid comments that make me want to kill someone... in particular them! :p

    As someone else said about 'god only gives you what you can handle'... well I don't know what he is thinking cause I sure know my lil girl cant handle much more illnesses... she's had more illness in her first year of life then both me and hubby put together in our entire life. And to be honest... it just aint fair! But to say that to someone... well they look at you as if you have lost the plot, and you wait the next coupla days for the men in the white suits to turn up on your door step cause your 'friend' has called em. :rolleyes:

    I have definently cleaned out the closet in the past coupla weeks. ;)
     
  12. zimbie45

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    i know what you all mean...MY daughter now has a great respose to people, fist understand she loves to tell people she is diabetic, so any time she hears a comment ( needed or unneeded comments) she walks right up to the person, and just simply educates them by saying..." my belly attacked my pancreas, and now i dont make any more insulint, and now i have to where my pump so it can give me my insulint so i can eat adn be healthy and not get sick....."( yes she says it with the t at the end of insulin), It usually makes most adults mouths drop that a little 5 year old knows more than them, but its also nice becuase it usually results in actuall valid questions.. SO i try use it an opportunity to educate... It hasnt changed many of my relationships with some of my "long time" friends, except one.. ( she has always been one to thry to out do me:mad: , or treats every thing as a competition, she stopped competeing when it came to the kids... i just ignor her competitivness ) .. I have noticed that when it came to preschool stuff.. some parents where very cool with it and had no problems, and the rest really had a big deal with it...
     
  13. T_Adelaide

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    Amy your post made me smile.:)
    It's hard isn't it, THEY don't know what it's like. THEY don't realise you have to think of it 24/7.
    I think the comment I hate most is "Oh I could never inject myself" - funny what you can do when the alternative is death isn't it?
    There are some friends we hardly see now, they don't understand or care about my life now, so I'm not interested in theirs ............
     
  14. kittycatgirl

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    Thank You!

    Well... after reading your posts, I feel a little better about things. Although I am also a little sad that on top of what we have to do for our children, we also have to deal with the feelings of our loved ones. I also feel like the social chat about hair, shopping, food, etc. is so irrelevant.

    I also get a lot of comments like.... I heard there was something you can inhale..... I heard about this thing called the pump.... They don't understand that from the minute she was diagnosed, or shortly there after, I was an expert on this subject. (Or close to it anyway)

    I find that I have to explain the difference between type 2 and type 1. My husband and I are big people, so we get this look from people like.... If you didn't feed her so much.... etc. (She is a tall thin blond) I guess I am just having a hard week. We all have so much on our plates that we shouldn't have to deal with this too. Thanks to all that have posted. I was feeling guilty about how I was feeling. I guess I shouldn't.
    Diana
     
  15. georgia

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    zimbie45,
    My daughter who is three, also loves to tell people. She doesn't explain it to people, as I don't think she understands it yet. But she just tells everyone "I have diabetes" at the grocery store, to our neighbor, the delivery guy the other day. She even one day picked up our little bag (, that we take everywhere, with her meter, snacks, glucagon etc) and told the baggage guy at kroger, "I have my meter in case of an emergency. I have diabetes"
    Ugh, break your heart.
     
  16. Ben'sMommy

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    Here's my problem:

    I'm young and most of my friends don't have children so the last thing they want to talk about is babies, diabetic or not!
    Like you Emma, the conversation is always about clothes, men, gossip etc which is fine except that it bores me to tears these days and sometimes I feel like screaming at them to grow up and get a grip.
    My family all have their own issues and do what they can but really it isn't much. I feel really guilty saying that because they all love Ben dearly but it's true!

    Thankfully Ben's Daddy, Aiden is "Super Dad" and is a fantastic help and support in every way. I feel damn lucky to have him. He's 100% involved in Ben's care and is always telling me that I do a great job. I don't think he realises how much that comment means to me.

    But I wish that I had people like all of you in this forum to call when I'm frustrated or angry or just in need of a sympathetic ear. It's weird to feel so close to people you have never and probably will never meet.
    Diabetes has connected us I guess.

    I can't blame anyone for not being actively involved or interested in Ben's care because they will never understand the severity of it physically or emotionally so I carry on knowing that at least I've got this place to come and have a whinge!!!!!

    By the way, if anyone's ever coming to Ireland, CALL ME!!!
    ;)
     
  17. EmmasMom

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    I wish I could! I'd LOVE to see Ireland.
    It would be so great if we could get together for "play dates"! :)
     
  18. BBergan

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    Friends avoid Diabetes all together!

    I am doing a walk for diabetes in Oct.1, 2006 and my son Nathan was diagnosed the end of March 2006. I haven't heard one response about the walk since I sent the emails out to all my friends. When I talk about it with them they change the subject and talk about something else. I feel like I have a diesease myself sometimes.
    My whole familys life change in a matter of a day. Nathan went to the doctors on that Monday and the doctor sent him home said he had a virus and Wednesday he didn't wake up.He was in DKA rushed to Boston non responsive and we were there for 7 days, you would think my friends would compasionate. I feel alone and wished they could understand.
     
  19. Tamara Gamble

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    Dear Bonnie, We just got back from NH we went to Canobie Lake Park your neck of the woods. My sister lives in Danville. We come up every year. Maybe next year we can get together and chat a while. People who don't have children with this disease or have it themselves just don't get it. I am so sorry you are having a hard time. This disease takes it's toll in so many different ways it's crazy. You are currently in phase one. It will get better and your new friends will be better ones. The old ones who hang in you know you are truely blessed with, (although they will still say stupid things) It's only because they don't know any better. Good for you with doing the walk! What a great example for your family! Hang Tough! God Bless! Tami
     
  20. Bella

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    Just wondering Tracy...... What foods do you not let Logan have???? I've been D now for 19 years, and trust me, back in the early days, 'they' (the experts) reckon Diabetics couldn't have certain foods. Now in 2006, 'they' have discovered that you can basically eat anything, as long as you have the insulin to cover it. I just hope you don't deprive him too much, or he might rebel (like I did as a teen-ager). Trust me, my parents suffered for that!!!!
     

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