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Wanting to keep D a secret - will she get past this?

Discussion in 'Parents of Children with Type 1' started by momof2greatkids, Mar 2, 2011.

  1. momof2greatkids

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    Audrey has just a few friends who know she has diabetes, and she is very self-conscious about anyone finding out, or even talking about it in front of her friends who do know.

    Last night, at her first swim practice since being diagnosed, when she needed to test, she went to the bathroom because she refused to test sitting on the benches. Not that anyone would have noticed, all the kids were in the water, and the few adults who were there were reading or watching the kids swim.

    She has been very responsible about testing and making sure anything she eats is covered with insulin. I hate to push the issue when she's taking everything else so well, but at the same time I think it would take some pressure off of her if she weren't trying to hide it always.

    I asked her about it last night - if the tables were turned, and she didn't have D, but someone in her class was diagnosed - what would she think, would she still be there friend, etc. She said she would feel sorry for them, but she wouldn't think of them any differently. When I asked why she didn't want others to know, she said because her best friend who lives next door asks her if she needs to test or if she got a shot. She said she can take care of herself and doesn't want others asking her all the time if she's okay.

    Middle school is next year, and I know she will want more freedom - walking home with friends, staying after school to watch games, etc. She can usually tell when she's going low, but that doesn't mean it can't happen without her knowing. Plus we're battling about the medical alert bracelets, but that's another story...

    Has anyone's kids come around and learned to be more open on this topic? Suggestions on how to talk about it without her just shutting down?
     
  2. jilmarie

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    Does she know any other kids with diabetes? I think that might be helpful. Diabetes camp perhaps?
     
  3. mocha

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    For me, personally, that desire to "hide" my diabetes has never gone away. It's not out of shame, but out of public perception.

    When I was (much) younger, other kids would police my diabetes. I've come to realize that my friends and family ask if I've checked or taken my insulin because they care, but when I was younger it felt like people asked because no one trusted me (or the occasional jerk at school who thinks they know everything about diabetes because of a five second clip they saw on CNN).

    I don't know your daughter, but it sounds like she's taking care of herself (with your help, of course :) )and just wants some privacy about her diabetes amongst her friends and maybe to just act like a "normal kid" out in public. It can be overwhelming when you're diagnosed, and sometimes just a few hours where the conversation doesn't come back to diabetes can be the sanity that helps you through the day.
     
  4. frizzyrazzy

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    I think I'd help her reframe this and show her that it's really her friends (or the one in particular) who has the issue and maybe help her work on what she could say to her friend to make her mind her own business. Kids are nosy. some more nosy than others. Ian has had diabetes a lot longer but he's still very private about it and hates when other kids ask him questions or want to watch him check his blood sugar. It's frankly pretty rude actually that kids will walk over and just look. He is learning to say "excuse me but I would like privacy". We're still working on that - as he's 10 and isn't the most communicative kid ;) And he will never willingly volunteer that he has D.

    But help her understand that her need for privacy is fine - it's the others that are behaving a bit rudely and she has every right to think so. But that going off alone isn't fixing the issue.
    She's still newly dx. :)
     
  5. JeremysDad

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    My Jeremy still does the same thing. It's not that he is self-conscious about his D or the fact that someone might see his pod sticking out from his shirt sleeve, he just prefers to keep it quiet. When he was on MDI, he would never bolus at the restaurant table. He would inevitably go into the restroom.

    As time has gone by, he has become a little more open. Some time ago, I introduced him to a Costco employee who was wearing his Mimimed on his belt. At first, Jeremy did not even want to talk to him but since I knew him, I asked him to show Jeremy his pump. After a while, Jeremy took out his PDM and began to tell this guy, who has been a diabetic for 20 years, how it works and what Diabetes means to him, It was quite cute actually.

    This week, Jeremy has been going to school wearing his pod on his arm, where it is visible under his short-sleeve T shirt. He seems less concerned now about what others might think about his diabetes. As long as he is comfortable with it, that's all that matters.
     
  6. txmom

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    My son hid for awhile, then decided that friends that could not get comfortable with him testing and injecting were not going to spend much time with him.

    He now has a group of 9 close friends, all of whom know he has D and have all seen him inject. They usually go out on Friday night as a group, they stop at our house at 9pm (ish) for Lantus. One of the guys is squeemish and can't stand to watch my son inject - the rest of group make good natured fun of him. It takes the spotlight off my son.

    Most sleepovers are at our house as I don't think it is fair to other parents to have them worry about whether they can handle D. My sons friends are fine with this, I provide plenty of snacks and they are happy to stay at our house.
     
  7. dejahthoris

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    When my son was diagnosed the doctor (whose t1dm daughter is grown, a diabetic educator and lives in New York city and married) told us that his friends would be an important support as he gets older, starts driving and doing more things. We showed his friends his bg monitor and try to tell them a little about it once in awhile. There are other type 1 kids in the school, one is in their little sisters girl scout troop, one of their Mom's used to work at diabetic camp etc. I think it is important for them to know how some basics such as to recognize a low.. Once they were doing archery and one of them got Fred some skittles when he was a bit low. They are getting it already.
     
  8. PatriciaMidwest

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    I think your daughter will come around. She is doing what she should be doing to take care of herself which is what really matters.

    My DD was dx'd in 5th grade. She was a bit self conscious at elementary, and even more so at the start of middle school with all the new kids and her being the only T1 in her grade. I suppose it's pretty normal - these are such awkward years for all kids. Now she is in 8th grade and things are a whole lot better. I hope it continues for the move to high school.

    Diabetes camp was a huge help for us. My DD didn't want to go but ended up loving it. That and maybe the 300 talks we've had about how it's ok to be private about some things but you also have to keep yourself safe by telling people what you need them to know.
     
    Last edited: Mar 2, 2011
  9. HBMom

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    My son is very quiet about his D. He was the manager of the freshman basketball team, and although the coaches knew about D, I don't think any of the other players really knew. He did test now and then, and did have to eat to bring up lows, but no one ever asked what he was doing until late in the season when he was getting a ride home from one of the player's moms. Turns out she has problems with hypoglycemia, so she understood a bit about his D, and he explained a little to the kids in the car.

    That said, I do require that when he is out for the day, either on one of his volunteer projects, or just with friends, that someone knows about D and knows how to help him if he needs to treat a low. I do also explain that if he does have the opportunity to explain D to others it is a good thing, and could help someone else in the future.

    There is a Diabetes club at his high school, and he doesn't want to have anything to do with it, which makes me sad. Yet, he spends countless hours volunteering with the Key Club - a branch of the Kiwanis Club. So, he decides when he wants to be associated with D, and I know that I can't decide how he spends his time, as long as he is giving to others, I am happy.
     
  10. sarahspins

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    I agree... and honestly I'm MORE likely to "hide" things from the people closest to me.. I don't test in front of family, especially not my mom, even though I am really close to my mom, she took care of a lot of "end stage" diabetes patients, so somehow in her mind, testing often has warped into "I'm really sick and in trouble" or the flip side "OMG, are you out of control now, do you need help"... so she simply doesn't see me test because I can't do so without getting a "OMG, are you okay, are you low, do you need something" type of reaction for her... in her case, normal diabetes management is just not "normal" for her because of the specific kind of nursing care she did (hospice), and I can't fix that.. no amount of trying to re-educate her has helped, so it's easier to avoid it. She sees my CGM as a cure of sorts, and so of course I don't "need" to test while wearing it :rolleyes: Yeah, and my pump gives me insulin for meals automatically :eek:

    Publicly, honestly I don't go out of my way to hide anything, but I am definitely fast and discreet about anything I need to do. I have seen people make a scene and carry on doing things that should be totally commonplace, and I don't want to be one of "those" people... it's not appropriate, and it does more harm than good I think, in terms of "educating" the public.. all it does is reinforce stereotypes and set us all back.

    I actually don't have a problem with people I don't know asking me questions - I get asked about my CGM all the time, and I think it's great to be able to explain how it works and what it does for me, since even a lot of people with diabetes aren't even aware that such a thing exists.
     
  11. sammysmom

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    My son has never hid his diabetes but he for sure does not want to be the topic of conversation! He refuses a classroom talk about diabetes every single year. The district nurse respects his wishes but really wants others to be aware. That is where the problem comes in, he does not want others looking out for him just because of diabetes. He does not want to be seen as the kid who "may" need help. If someone asks a question while he is doing D care his typical response is "just taking care of myself". We are working on phrases that are polite yet get the point across that he does not want to talk about it. He will not even go to diabetes camp because he does not understand why he would need to make friends with someone just because they happen to have the same condition he does.....Its a losing battle that we fight every year. In some ways though it does let me see that Sam does not see himself as "diabetes boy". It is not the first thing on his mind and it is not what he cares to talk about. To him it is a condition that he has that must be managed but in no way defines who he really is.
     
  12. bibrahim

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    My DD is similar in age, Dx a year before yours. She was very private, didn't want a pump because people would see it, etc. Diabetes camp was phenomenal for her. She can't wait to go back. She came back ready to pump. She has a core group of friends who know about D. I think more than that actually know, but these are the ones she talks to about it.

    She came back from winter break with D and I attended school with her for two days until the nurse got people trained. So, I am sure the kids talked about why I was there. She both tested and gave shots in public but now that she has the pump it is so much easier to be discreet.

    I don't know if you watch Desperate Housewives but we joke about being Susan and using her Dx to get what we want...and we do on occasion use D to sneak a goody into an event or something but in general we are very discreet about it.:rolleyes:
     
  13. Scribe

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    I offer this in the most gentle way possible ... why fight it? I have been T1 for 52 years and in all that time neither I nor my single mother have ever told anyone - not in grade or high school school, college, work, sports or anywhere else (even when I spent time in Iraq and Bosnia). Only my mother, wife and two kids know I'm diabetic.
    I'm not the least bit ashamed; it's never been necessary. And the older I get the more convinced I am that non-disclosure is the foundation for my successful life with D. It forces me to pay attention to what matters, discard the trivial and find a routine that has served me well for decades.
    I've never found it onerous or difficult. Quite the contrary - I don't have to deal with questions, the food police or insinuations of favoritism because of my "condition." In fact, it's totally liberating.
    I'm not suggesting it works for everyone, but why not try?
     
  14. dejahthoris

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    I think three reasons to be "out" are to help enlighten people as to what this condition is, to realize it is nothing to be ashamed of, and for safety reasons in case one goes low. Not just for oneself but for all diabetics. We all have heard of instances where diabetics have been arrested or endangered because of lack of knowledge about hypoglygemia. I think if more people took the time to engage and enlighten those around us there would be much less of a stigma and more knowledge and fewer misconceptions. I am not talking about special treatment. But it is a medical condition that could require assistance. I think it is wonderful, for instance to see what Jay Cutler, the quarterback of the Bears, is doing. He is "out" with his diabetes and also constantly mentors type 1 children, quietly has given an entire hospital pediatric ward Christmas gifts and pays for children to go to Camp Kudzu, and has much ongoing charity work etc. It has been a HUGE encouragement to my son and my entire family, even my Grandfather to see people like him and what he has accomplished. Another example is Phil Southerland, the founder of Team Type 1. My son's PE teacher showed the class a film about him and Team Type 1. It was as if to say, yes this is type 1 diabetes, we have to check blood sugar and take insulin. We have to be careful, but we can still do this! Very few people are perfect and we have close friends and family with a gamut of conditions such as severe allergies, mental illness, congenital conditions, special needs, asthma, being in a wheelchair, deafness, heart conditions etc. These conditions do not define them, but are part of who they are. There is no shame in this and no reason to hide, and we support each other in a positive manner.
     
    Last edited: Mar 3, 2011
  15. MamaBear

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    My son (diagnosed this past july) is very private about his D. He doesn't want to be public with it and he hates people asking if he's ok. Unfortunately we have had 3 instances now where someone at the school made it public for him, and he was very upset. I think being private about D or any disease is a personal choice. Some people are very open and some are not. Both are ok.

    If it were adults rather than children, or any disease other than D, would we push anyone to make it public?
     
  16. swimmom

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    As long as the coach knows, I'd let her maintain the level of privacy she is comfortable with. It might be helpful to practice scenarios where a neighbor or someone asks about her diabetes (and sometimes it can be in a very pushy way) and let her think of some reasonably polite, but firm ways to handle the situation. Someday, she may actually need help a concerned person. Most of the time though, it's just annoying and she needs some way to respond. It can be helpful to practice.
     
  17. pianoplayer4

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    I guess I'm the different one here=) I told all my friends right at the begining,educated them, and they were all super suportive. However now I tend to hide it more just because I don't want to talk about it. my life is not all about d and some well meaning people may want to ask questions and learn but it just too much for me to talk about all the tiem and many people seem to start to see so much d in me, they forget that I like to talk about other stuff:rolleyes:
    I'd say if she wants to hide it then is there one friend that she is with alot that she could tell? some one who would not tell anyone else or make a big deal about it but could know in case of an emergency??? she could decide how much to tell them.......

    ETA- for practice she could keep her meter in her bag on the bleachers and just keep the kit in her bag while testing.... just a thought=)
     
  18. jules12

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    As long as she knows its not an option to avoid treating, testing, etc. for fear of others knowning or asking questions. D shouldn't prevent you from doing what you want to do. During sports, my son tests his bg on the bench or in the dugout but off to the side. He is so quick at it, most people don't even notice what he is doing. We played on the same baseball team for two years and a lot the parents never knew he had Diabetes.

    She will get more comfortable as time goes on - just focus on being sure she manages it safely and praise her for that!
     
  19. DsMom

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    It sounds like you approached her in just the right way. Maybe she just needs more time. My son is young and doesn't have any problem with his friends knowing. In fact, I think he feels sort of like a celebrity because he gets to choose who takes him to the nurse at school--and of course everyone wants to get out of class to go with him! I have an 11 year old (nonD) daughter, too. Your daughter's behavior sounds pretty consistent with any preteen's--they're all self-conscious about EVERYTHING!!:D Sounds normal that she might want to keep her D private--at least at first. I'm certainly one who believes in not hiding anything. We test Daniel anywhere and everywhere--and he just sticks out his finger and doesn't think twice. But giving your daughter control in this area right now--when everything else may feel very out of control--may be a good thing. I'd encourage her to connect online with other kids--and camp sure sounds like a good idea, too. She'll most likely feel more comfortable in time. Perhaps you can revisit the topic in another 6 months or so--ask her how she's feeling about it then. If it becomes a chronic fear for her, I'd be concerned. But, for right now, it sounds pretty normal to me for her age and her newness to D. Good luck!
     
  20. mocha

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    I like the idea of levels of how much people know.

    My husband and family know the most, and I spend the most time with them.
    My good friends know a lot, but not as much. One good friend has a younger sister with T1D, so she knows a bit more than my other friends, but she's not in the "know all the details" category.
    Some of my professors know (my mom wonders why they all don't know, and that's a judgement call on my part), and some classmates know.

    I've told the people that know what to do in case I look like I'm not doing well.

    Outside of these people, if others ask, my reaction will honestly depend on the day I've been having. (I don't view it as my job to be a diabetes mascot, and therefore, not my job to dish out details and answer questions that are easily answered on CWD or ADA. I do view it as my job to take care of myself and to do my best in all I do.)

    It's just really hard and awkward to be polite and be open when people use you as their "diabetes expert" (and then believe they know everything), or start policing your actions, or stare all the time, or ask the same question millions of times over, or use the information that they have found out against you or hear stories of this happening to other people.

    There is a lot of stigma, a lot of ignorant people, and a lot of jerks. There are also a lot of caring people, a lot of people who desire to learn, and a lot of people who don't pass judgement over being diabetic. The problem is that the jerks don't announce who they are.
     

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