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"I'd rather be dead than have diabetes"

Discussion in 'Parents of Children with Type 1' started by jenm999, Nov 24, 2015.

  1. jenm999

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    My son said this to me last night while I was calmly making him test his BG for the zillionth time. I figured it was just the heat of the moment but then I asked him about it again this morning and he said it was true, very matter-of-fact. I know he doesn't want to die; he's a spunky and fun kid (age 8) with a million friends. But I'm a bit thrown by this.

    About six months ago he (again, in the heat of the moment) said things like, "My life is ruined." I called and got him an appointment with the psychologist at our hospital who specializes in kids with chronic diseases (and has T1 herself) but she is leaving and it's hard to get an appointment with her. (Frustratingly she lives in our town and has a private practice but does not take insurance). When we saw her in the spring she spent an hour with him and then told me that he does not seem depressed at all, but rather is grasping for the strongest language his little brain can conjure. Kind of like when kids scream "I hate you."

    Gauging by my own infuriating experience trying to find a therapist who knows what the heck this stupid disease is about and what it entails, I know it will be hard to find him someone good. But I'm going to try. I'll contact our CDE today for referrals.

    Anyone else have this experience? Any wisdom to share? Trying not to get too upset by this.

    I ****ing hate this disease.
     
  2. MomofSweetOne

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    Sounds like your evening rates right up there with the night my daughter told me she'd never want to go on a starvation diet like Elizabeth Evans Hughes was on before insulin to try to stay alive a bit longer if insulin ever became unavailable. That's not the type of conversation one expects to have with one's parent, not their child and adds to the loneliness of parenting with the added dimension of a chronic illness.

    It sounds like you got some good advice from the psychologist in the spring. My daughter came home from camp once saying they had made "Diabetes Bugs Me" papers that they wrote their grievances on and then stomped. It was geared for your son's age. Maybe it would help? She thought it was corny, but she's pulled it out a couple of times in terms of posting a list of things she hates about diabetes on the frig. I was invited to add mine, but then she told me mine were too depressing. I guess she caught me in a mood like yours.
     
    Last edited: Nov 24, 2015
  3. Snowflake

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    Amen! My daughter's pretty cheery and accepting 99% of the time, but she has melted into a sobbing mess on a couple of occasions.

    It might be worth trying to find another therapist even just for another few sessions, although I know that's easier said than done. We are in a narrow-network HMO that provides amazingly good coverage of D supplies and specialist visits, but the options for specialist counseling services are essentially zero. The one time I tried to find an appropriate counselor for my daughter, I ended up throwing up my hands after wasting a couple of work days combing through the provider directory. By that point, she was back to her usual happy self, but I think she'd probably still benefit from a few counseling sessions. I wish we got more support like this from our endo clinic...

    Instead of therapy, I have to admit, I do sometimes resort to crude techniques like spoiling: When my daughter was first diagnosed, one of my mother's friends who had raised a child with another serious chronic illness took me out for coffee and told me to make sure not to let diabetes affect my parenting, and not to coddle my daughter just because of her health issues. But I find I can't always follow this advice! Most of the time, I treat dd like a regular kid, but when she's going through a rough patch with T1D or celiac, I do indulge her -- which could mean a new toy or an impromptu trip to the movies to thank her for working so hard and putting up with so much crap. I figure I can't take the disease away, but I can distract her from it.
     
  4. DiabetesMama

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    Wow, we just had a talk about this this morning! I knew he was kind of down the last few days, but this morning he said "I hate this. I hate having diabetes" I asked him for what was making him so upset and he calmly said "All of it." I thought that the pump would help, the CGM would keep from having to test more, that the whole system would help with having a more normal life. Stupid me. I know deep down that he is grasping that it's a lifetime sentence. It is. He just voiced that he has put two and two together, how long he has been dealing with this by himself, I am unsure. And the fear that I have is this...we have only been fighting this for a little over a year and a half. We haven't even hit the teenage years. What is the future going to hold? I told him that there is a lot of new things coming and that we just have to wait, that they are making amazing things for the whole Type 1 group. I told him that there are so many kids feeling the same way he is and I told him I hate it too. What can we do? How do we help our kiddos who go through the day and night with this on their shoulders? I felt like I was really suffering with it, but I realize that he is right there with me, and just because this is the first time he has voiced his emotions about it, that he has been going through more than I can ever imagine. What can we do?
     
  5. njswede

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    I know the feeling too well... Noah is a trooper and a hero most of the time and Dexcom site changes, as well as pump site changes have been a breeze. But a few weeks ago, something went wrong at a pump site change. I must have hit a nerve or something, because he screamed at the top of his lungs. Knowing that I caused him that pain was a horrible feeling. He was hiding at site change time for a while, but luckily everything is back to normal now.

    That's the way D has been treating us over the last 10 months: Just when I think I got this down and it's no big deal, D comes and kicks our butts with a vengeance...
     
  6. rgcainmd

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    I am a big believer in this approach. ^

    My daughter is a "regular" kid and I treat her as such. But she is not "normal" because "normal" kids do not have to deal with this disease, day in and day out, 24/7, for life. I think there are times when doing something extra special is warrented. Our T1D kids deserve this!
     
  7. Christopher

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    I think it is perfect that you ended your post with this expression of how you are feeling. Because I think this is exactly what he is trying to express in his own way. I think it is completely normal for our children (and us as caregivers) to go through all sorts of emotions at all different stages of living with this "fuc**ing" disease. And depending on our age and/or ability to express ourselves, we may say and think all sorts of things. I know for myself, in the early days of coming to terms with this new life, I had some pretty dark thoughts. If you feel he needs to talk to someone then I think it is great that you are pursuing it. He may or may not need it but at least he has the option. Or it may just be a passing feeling for him and he just needed to vent and he will be fine.

    So no real wisdom to share here, just know that most of us here have been through this with our children (and ourselves) and that like most things, it will get better over time. Danielle at 17 often times seems WAY more annoyed with ME than with her diabetes! :wink:

    Hang in there


    P.S. sometimes I find going someplace private and loudly cursing diabetes with every filthy, nasty curse word I can think of can be quite therapeutic...... :glee:
     
    Last edited: Nov 24, 2015
  8. jenm999

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    Thanks, everyone.

    Just to be clear, I did not type ****. :)

    I totally agree about careful spoiling. I think of how many times pre-diagnosis we'd get an ice cream or other small food treat "just because." So now we get a Lego minifig "just because." We want to make him feel special, hopeful, loved... all those things, without making him feel entitled.

    I know he's not suicidal, but no parent wants to hear a child say they'd rather be dead. I made a bunch of calls this morning, making more now. I also think we are going to send him to camp no matter what. He went to the day camp for a week and did one sleepover night at the end and loved it, but says he's not ready for overnight camp. I think he is and will get so much out of it, including making peace with his condition and finding his tribe.

    Really appreciate all the supportive comments, thank you.
     
  9. suej

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    What helped my son is that my older son's best friend has diabetes and so in a way he has a really good role model as he can see his older brother's friend doing so well, he has academic honours, plays first team basketball and is socially very popular, and he often comes on holiday so there are 2 children living with diabetes. Sort of a norm. (Unwanted, so unwanted).

    We also had a strange moment, about 3 years into diagnosis Ben, about to settle to sleep suddenly said, I can't believe I have diabetes , it was as if the reality of it was only settling in then. Heart gutting. But mostly the kids are stoical and get on with it, and have good lives, and while they are in the home I do agree with careful spoiling, and distraction for sets and sensors (computer games), and as parents I think we do try to take over a lot of the worry work and night care for them. But it is hard, Our children are superheroes.
     
  10. mamaberkhie

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    I hate this disease too. I relate to everything that's being said here and I'm starting to realize it doesn't get any easier as they get older. When he was initially diagnosed at 3 everyone used to think they were being helpful by saying things like, "Oh, he's so young, he'll never know the difference. This will be normal life for him." But they are so wrong!

    Now that he is in school, he is beginning to see that this is not life at all and now the realizations are starting to sink in. He's starting to ask how long until he doesn't have to do all this anymore and it kills me.
     
  11. jenm999

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    One of the twenty therapists I called yesterday called me back this morning and, get this, she wrote her doctoral dissertation on kids with diabetes! Let's hope she's as good in person as on the phone. We meet with her (without our son) next week. Fingers crossed.

    L is back to his old self. We're repainting his room over the long weekend and having fun with colors. Off to get some cool posters today on the way to grandma's. It will all be fine.

    Love and thanksgiving to everyone here for the virtual hugs, and happy swagging tomorrow!
     
  12. rgcainmd

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    SO happy to hear your little man is doing better!

    And happy SWAGging to you, too, and to everyone else on this Forum. Thanksgiving is definitely one of those days when you should pre-bolus to the best of your ability, then eat what you want, then correct if indicated and move on! Especially on Thanksgiving, "it's only a number!"
     
  13. DiabetesMama

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    Yes, only a number! Happy Thanksgiving everyone! Give those kids squeezes and kisses and tell them you are thankful for them!
     
  14. blufickle

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    For all you moms and dads of children. Let me tell you that your children will survive. There are a lot of us adults who survived being a diabetic in the "dark ages" when we had to test our urine, there were no A1C tests or at home glucose test, and had to take insulin one time a day. I think it's best to try to treat your diabetic child like they don't have it, like they are like your other children if you have any. The diabetic child knows they are different because if they have a pump or a CGM they see it every day. They see the finger sticks, everything that goes with being a diabetic. The carbohydrate counting. They want to feel like they are just like their sibling or their best friend. Getting them to talk to a professional is a very good thing because sometimes they need to vent to someone besides mom and/or dad.
     
  15. MamaG

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    My daughter knows she is the only one who gets her fingers pricked and she knows nobody else has a pump. Not among family members or strangers we pass during errands and now that she is in school things are even worse. She has to bring her tray to the nurse, she sits with a buddy at their own table, she even has her own snacks that we bring in to make it easier for the teacher to count her carbs. Parents ask me all the time "What should we bring for so and sos birthday so your daughter can eat too?" People just don't know anything about T1D apparently. It isolates us all. I think my daughter takes all this in so much better then I do. I get mad. I get sad. She seems to just breeze through it. She truly is my hero. I've never met someone so small and amazing.

    I can only imagine how it will feel when she asks me questions like that. I get sad whenever she talks about being a Mom one day. I know it is entirely possible but also so entirely not possible too. Nothing will be simple for her. So not fair.
     
  16. jenm999

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    Just wanted to update you all that my husband and I met with a therapist today who we think will be great for our son. Found her totally by accident - went to my insurance website and put my zip code, selected someone who treats children and specializes in chronic illness and she popped up. Turns out her doctoral dissertation was called, "Psychological perspectives on juvenile diabetes : the impact of locus of control orientation on learning, psychosocial adjustment, and metabolic control"!!! She is lovely too.

    She did say that she would love to see him but it sounds like the most beneficial thing for him would be to spend time with other kids with type 1. We've done day camp, and he has a few friends we've met through various JDRF events, but he doesn't really have any friends nearby or that he sees regularly with type 1. I've tried so hard to network but it seems like everyone is just so busy. We've decided to host a family potluck. If you're in the Boston area, send me a PM with your email address!

    All in all, moving in a good direction.
     
  17. caspi

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    I sent you a PM. :)
     
  18. Sarah Maddie's Mom

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    Just remember that we all get down in the dumps about D sometimes and nearly all of us resurface :)

    I'm not sure mine ever said that she'd rather be dead, but honestly, it wouldn't shock me if she had. It's 85% routine, 10% disruptive and 5% just want to lay down and give up. It's good that you aren't ignoring it but I'd just toss out the possibility of perhaps letting the spending time with other D kids thing be... organic. Not every D kid responds well to bonding over D. Obviously you know your kid and you are attentive and pro-active so you'll likely know if that's the case for your son, just don't think he is more troubled because maybe he doesn't click over diabetes. Fwiw I've met dozens of Type 1 parents and only found a very few I'd call friends.

    Good luck!
     
  19. kim5798

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    So glad you lucked out finding a therapist who seems to be perfect fit! I have to say that I think spending time with others who have diabetes can be a help. My daughter has a group of friends she has met thru diabetes camp, and in turn, I have friends(their moms) who I met because of camp & the girls getting together & there is something to be said for friends who do "get it" and really do know what it's like. If I have a particularly bad experience diabetes wise with my daughter, THEY are the ones I might send a text or email to, or call. I might also talk to my friend who does not have a child with diabetes, but those moms understand my struggles in a way that others can't possibly understand. I think my daughter feels the same way about her diabetic friends. She has friends in her day to day life that are special & close, but those girls that understand firsthand the challenges of diabetes are a whole other category. Some of those kids(boys too) she may only talk to once & a while, but when one has a problem & they call & catch up or get a chance to see each other, its like they have this special bond or connection. I realize that not all kids are going to have this experience, but I think it can't hurt to encourage it.
     
  20. DavidN

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    My son said something similar and we were really taken back. We took him to see a therapist the previous year for a really bad bullying episode so we took him back after dx when he said something about diabetes and dying. She saw him a few times and said not to worry, he's really in good spirits and doing great. I think someone earlier nailed it when they said (paraphrasing) that a kid's words for "T1D fu***** sucks" may come out like "I'd rather die". As an aside, we bought a trip package through a JDRF related auction to see the Macy's parade in NYC and went this past weekend. We were stationed on a 10th floor balcony outside in beautiful weather overlooking the parade. It was a really fun time. During the parade, my son turns to us with a smile and says, "the only reason we're able to do this is because I have diabetes". This from the same fellow who used diabetes and dying in the same sentence not too long ago. More evidence that he was just expressing his frustration.

    By the way, we absolutely loved the therapist my son saw. Terrific. Unfortunately she moved to Boston. So if anyone's in that market looking for a very strong referral for a LICSW, let me know.
     

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