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Upsetting Things People Say About Diabetes

Discussion in 'Parents of Children with Type 1' started by Richard157, Mar 28, 2013.

  1. Richard157

    Richard157 Approved members

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    Pardon the intrusion, I know this forum is for parents who have children with diabetes. I was diagnosed in 1945, when I was 6. I hope it is ok for me to talk some about my past, and my type 1 diabetes.

    In 1945 there was so little awareness of diabetes. None of our relatives and friends had heard of it. When I was in my 30's two doctors told me I would not live past my 40's. When I told a few friends what the doctors had said, one of them said that my parents must not have taken good care of me while I was very young. At least they did not blame me, they blamed my parents. Now I am 73, have been type 1 for 67 years, and I have very good diabetes health. My parents took very good care of me. That is why I made it through my childhood.

    I did not know about the possible complications that we can face until I was an adult. My parents did not want me to go to college.They thought my diabetes would make it impossible for me to do well enough there, and that I would fail. They refused to pay any part of my college expenses. I got a job and worked my way through college, and graduated with honors. My parents were proud of me. That meant as much to me as my college degree!

    Do any of you remember things you were told or that you experienced that were very upsetting?
     
    Last edited: Mar 29, 2013
  2. sooz

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    I'm guessing the purpose of the thread is to share experiences.
    Richard, you are such a wonderful role model. D care has come so far in your lifetime! The most upsetting thing by far that I heard was when I was told she was in PICU and had been diagnosed w type 1. Everything else has paled in comparison.
     
  3. Joretta

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    I think it is an excellent reminder to not let uneducated people stop you from helping your children achieve their dreams, as no one can see the future and all we can do is live for today and make it the best we can give. I love to hear how someone survived without all our gadgets to aid us and to learn my child might live on even if we lost all of our technology if she was careful strong and wise.

    My worst is when a phycologist tried to say maybe my child should only have salad for lunch. Then she would not go high after PE exercise. Exercise makes many kids go high and then low hours later. A salad is a good healthy choice but not when the school loads with greasy fried chicken, cheese, and a ton of croutons. Oh, and then only has a high calorie ranch dressing. The carbs and calories add up to more than a slice of pizza.
     
  4. coeen

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    It is nice to hear through other's experiences that my son can and will be able to do what he would like to do. Thanks Richard!
    We have only been in it less then 2 years. We were at the park about 6 months ago when a mom there saw his pump pack and asked about it. I told her he has T1 diabetes. She asked me if I gave him too much candy when he was a baby. He was three at the time she asked me. Hmmmmm. I told her no and went on to explain to her about his type. At first I couldn't believe she asked me that but got over it.
     
  5. TheLegoRef

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    One of the most upsetting things that happened to us, made me angry and scared (scared of it happening again). A substitute bus driver would not let my son test when he felt low on the bus. Then another time a sub for my son's class, I forget what it was, but the person wouldn't let my son leave the classroom, and the whole class was telling the sub that they had to, because my son is diabetic. I forget if it was to test, or get water, or what. My son was always fine, but it makes me upset when adults stop him from caring for himself. Both times I called the school and we put an action plan in place to prevent that from happening again.
     
  6. cm4kelly

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    This is a curse -

    I wanted to slap someone when they told me that my 2 1/2 year old son's diabetes were the result of a generational curse by God.

    How can someone be so ignorant! I truly wanted to slap them. WHAT IS WRONG WITH PEOPLE?
     
  7. Becky Stevens mom

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    Hello Richard! good to see you:) Unfortunately, even in the latter part of the 20th century there was still a great deal of misinformation about type 1. When Steven was diagnosed my MIL asked me if Id given him alot of candy to eat :rolleyes: He was only 3 but sure, I stuffed him with candy after every meal. It can be difficult to be patient with people and help them to get the right kind of info but its good for them and good for us if we can do that.
     
  8. Richard157

    Richard157 Approved members

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    I appreciate the replies made here very much. I am a member of several parents groups on Facebook. The moms there appreciate my being there and reminding them that their children with diabetes can have long, wonderful lives, despite the odds. There are thousands of type 1 diabetics in the US who have lived with type 1 for 50 or more years. The Joslin Diabetes Center in Boston awards medals to those individuals. There is a Joslin Medalist Study in progress. More than 800 medalists have participated. I participated in 2009. They are trying to find the factors that make us long term diabetics different. A treatment might come from the study that would be beneficial to children with diabetes.
     
    Last edited: Mar 29, 2013
  9. Becky Stevens mom

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    Richard, youve always been such an incredible inspiration to me and my son :cwds: I think its a good and healthy thing for parents to be able to talk about some of the things they may hear from those who are ignorant about type 1 and how we can help to educate these people. Its especially good for newbies. They are so fragile in the beginning but still have to hear people silly comments or questions :(
     
  10. JNBryant

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    Being that we're just one month shy of our DS one year dx anniversary, I find it extremely comforting and uplifting to hear from someone who's been living with T1 for so long. I've encountered many comments that I've found to be hurtful, offensive and sometimes just downright rude. With that being said, I've come to realize that while the word 'diabetes' is familiar with many people, there are many out there who have no clue as to what it entails or how it comes to be. I've heard the 'too much candy' comments as well as the 'he must have gotten it from you' remarks, and while I try to educate people as much as I can, there are still those who just don't get it. It took some determination and practice not to lose my temper or get upset, but now I just take those comments with a grain of salt.
     
  11. valerie k

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    Richard, you are never intruding on the forum, your such an inspiration. I read your entire story you posted here, loved it.

    I guess, the only thing that springs to mind for me, would be the dr saying matt could never be part of the military or other jobs such as astronaut ect. Hard to go from always saying YOU CAN DO ANYTHING YOU WANT... to well... you now have a huge obstical and some things just may not be in the cards.
     
  12. jbmom1b2g

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    I was asked what I fed Taylor when she was dx. And then from the same person she told me because I chose to vaccinate her she got diabetes. I told her my BIL has it so she got it due to hereditary. when people say dumb things I just ignore the comment.
     
  13. Heather(CA)

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    The worst one happened as I was driving Seth home from the hospital after dx'd. I woman in our neighborhood (Busy body) flagged us down on a neighborhood street. She had heard about Seth's dx'd and asked how he was doing. Then before we drove away she said "Just make sure he doesn't get under 20" Seth is 7 years old, he innocently asks "What happens when you get under 20?" She replied with "You die"

    He had nightmares for weeks because of her stupid comment to a child :mad:
     
  14. StacyMM

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    I always struggled with people that were so clueless as to be cruel. When DD was younger and people would see the syringes and such, they would commonly ask about it. And you know how people just don't see kids as thinking, listening, people? They would then proceed to tell me how their uncle's brother's neighbor's wife had it and went blind/lost their leg/died. It's like, "Do you not see her?!? Standing right here beside me?!?" Who would say that? And who would say it in front of a kid?!?
     
  15. LJM

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    Richard, enjoyed your book!

    I think my biggest pet peeve is people talking about friends/family that have lost limbs, gone blind, died, etc. etc. Usually they choose to do this in front of my kid. Like we don't know the worst case, really?

    That and people who point out how strong our family is and how well we handle things and that they just could not face such a thing themselves. They may as well say: boy I am sure glad it is you not me. Crazy, crazy making.
     
  16. Jennifer126

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    Maybe not the worst thing someone said to me but one that has me completely confused is when someone told me her niece had one goldfish and it sent her to almost 600.... uhhhhh I still can't figure out the math on that one.... and if it is even possible! 55 goldfish = 20 carbs?!? Makes me question everything and wonder if I'll ever get a handle on things.
     
  17. sooz

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    Lmao at myself. It took me a minute to figure out you meant goldfish CRACKERS lol. I had a picture in my mind of her holding up a wiggling goldfish by the tail and swallowing it whole, and thinking, wait, fish don't have carbs! :p:p:p:D

    It must be bed time.:eek:
     
  18. MrsRulestein

    MrsRulestein New Member

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    We have had a few weird comments

    Less than 2 weeks after dx, somebody jokes, "It's your fault because you gave jelly beans each time she wen't in the potty." (I'll admit, I did think this at first, but let's be a little sensitive)

    Around the breakfast table, 3 months after dx, somebody I don't really know contributes, "Well if you eat right and stay healthy, you won't get things like type 1 diabetes." This one I had the courage to respond to, telling them that it was an auto immune disease that couldn't be prevented.

    Some nosy girl is watching me test DD's BG, she asks, "What are you doing?" I say I am checking my daughters blood sugar. She asks why. I say because she has type 1 diabetes. She says, "Oh, I used to have that but it went away."
     
  19. greenpalm

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    Respectfully snipped this quote. I want to agree with this 100% I've had a number of people tell me how much easier all this is going to be because DH has it already, and a couple of them have added how they'd never be able to handle it if it were their daughter. Most of these people have been my daughter's friends parents. And yes, it feels like they are saying, 'glad it's you and not me.' Horrible.

    Similarly, I've had people say things like, "you're so strong and you've withstood so much already, you're going to be so awesome at this! If anyone can handle it, you can" (my mom died of leukemia, and I've done lots of fund and awareness raising events, mostly motivated by 10 years of anguished grief) it's supposed to be a compliment, but when I'm freshly into the dx, it feels like an unreasonable expectation, and even a burden. Now I have to wow everyone by not only taking care of her, but becoming some kind of spokesperson too.

    Me too! Eeeewww!

    We've escaped the horror stories so far, but I'm armed and ready when they come. Virginia Loy says in her book that she literally puts her hand over the adults mouth when they start those tales. She physically stops them from speaking.
     
  20. Jeff

    Jeff Founder, CWD

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    Just a quick note to say that I removed several posts that were derailing the discussion. I chose not to edit one post that quoted one of the removed posts though.

    We've all been the recipient of what can best be called "stupid but well-meaning advice" from friends and family, as well as ill-informed comments from people who confuse type 1 and type 2. Much of the latter relates to cause -- too much sweetened cereal being quite common for those of use whose child was diagnosed very young.

    And there's always someone whose great aunt "got the sugar" and lost her leg after "going on the needle" and then died, spoken ever-so-politely in front of you and your child. The only upside of those comments is to allow us to teach our kids about the different kinds of diabetes and the enormous strides made by medicine in recent decades, reassuring them that they are more likely than not to live a long, healthy, and happy life.
     

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