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Dealing with people

Discussion in 'Parents of Children with Type 1' started by njswede, Feb 20, 2015.

  1. njswede

    njswede Approved members

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    (Venting...)

    Having a newly diagnosed kid certainly brings on some new challenges! So much to learn, some habits to change and some things you have to get used to. Speaking of things to get used to, people's reactions to the diagnosis certainly takes some getting used to. I've had a few conversations like this:

    -How is... Ehm... Noah.... you know... ehm... doing?
    -He's doing great!
    -Really? But I heard that he's... you know... ehm...
    -Diabetic, you mean? Yeah, we just found out a few weeks ago.
    -(Facial expression as if someone had died the most horrific death!) Ooooooooooh, that's sooooooooooooooooooo sad! It must be sooooo hard!!!!
    -Yeah, it's a lot of stuff to get used to. But we're dealing with it. And Noah is doing really well.
    -Yes, but it must be so difficult for him.
    -Not really. At least not yet. He's dealing with it and is doing great.
    -But this is sooooo life changing for a little boy like that.
    -Yeah, probably when he's a teenager, but at this point, he's still doing exactly what any 7 year old boy would be doing. He's fine. Really.
    -(Looks like they're trying hold back tears) But still, this is something he's going to have to live with for the rest of his life! (Spoken like we've been damned to hell or something)
    -Yes, it is. But we're taking it one day at a time and so far so good!
    -Yes, but it's such a terrible disease... (Looks like they're fighting tears)
    -Look, we're dealing with it and he's fine for now. We'll keep dealing with it day by day. He's gonna be fine!
    -(Looks really uncomfortable) Uhm... OK. Gotta go!

    I know people are trying to show that they care and I know they are genuinely trying to be nice. But still... I wish people in general could be a bit more like you guys are on this board. You know, saying something like "Sorry about the diagnosis, but you seem to be dealing with it and you'll be fine" instead of coming across as if we're a doomed family.

    Sorry for all the ranting, but I've found this message board to be a good outlet for my venting.
     
  2. Snowflake

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    Not to take anything from your response -- which you're absolutely entitled to! -- but I actually wish my daughter got more of that kind of empathy from people in our life. Other than our very closest family members (all living out of state) and a single good friend, I feel like everyone in our life -- our friends, her friends' parents, our coworkers -- avoids the topic and changes the subject if it happens to come up.

    The general attitude I feel like we encounter is "Well, she can take insulin, and that's as good as a cure," followed closely by "Well, at least she got it young, so it's all totally normal for her." Yes, T1 is a manageable disease with better prospects and tools than in the past, and yes my kid is leading a totally normal middle-class American life, but it's also a hard, hard grind and a burden that she can never unload. Almost three years in, it seems to me like our friends are still a little shocked if we're swimming and we have to pull her out of the pool for a low, or if we mention to a colleague that we had to give her juice in the middle of the night, or if she has to miss some excitement at school when a stomach bug spins out of control, or whatever other wrench T1 throws into normal life.

    Anyway, this is just a vent from the other side. I guess it's hard for a CWD's friends and acquaintances to know how to react, because different people take comfort from different reactions....
     
  3. njswede

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    Yeah, I can appreciate all that. I'm very much a living in the moment kind of guy (if you haven't already guessed that). I'm extremely grateful for what I have and where I am in life and I tend to focus on that. If anything, Noah's T1 has made me realize how much he means to me and how lucky I am to have a son like him.

    I'm fine with empathy, but I don't need pity. And yeah, I've already had to wake him up in the middle of the night to treat a low and I've had to do some emergency testing and treatment of low in a dark movie theatre. It sucks! Having to plan everything around his condition and always carry supplies and emergency kit sucks too! Some things are going to suck even more, I'm sure. And I'm scared to death of him catching a stomach bug. But no pity, please!
     
    Last edited: Feb 20, 2015
  4. Sprocket

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    When DD was first diagnosed, I really irked me when health professionals, and non-health professionals would call diabetes a "disease". We never thought of it that way and still don't. My daughter always said "I'm not sick" and I agree. To us, diabetes is similar to other conditions where the body doesn't have the ability to process something the way it should (eg. celiac, lactose intolerance, thyroid problems etc.). We realize the seriousness of diabetes, but we believe it sure could be a lot worse. When we attend our endo appointments, we thank our lucky stars we have something that can be well managed and controlled - there are many kids and families much worse off. We call diabetes a pain or an inconvenience, but we don't consider it a disease.
     
  5. njswede

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    Sprocket, you hit the head on the nail! That's exactly how I feel!

    I've watched a loved one die from cancer in a very messy way and I have a close friend whose son died from leukemia at the age of 4. I think that puts diabetes into perspective. Yes, T1D is potentially deadly, but at least we have a fighting chance to manage it and there's a pretty good likelyhood he'll live a long and happy life.

    Then again, I shouldn't complain about people who don't have the same view on life as me. They're just trying to be nice in their own way, which is not necessarily compatible with mine. I think I'll have a beer instead of complaining. Have a great Friday!
     
  6. missmakaliasmomma

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    Love your response. This is what I try to tell people
     
  7. MayaNYC

    MayaNYC New Member

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    Njswede, I completely agree!!! Pity is absolutely the worst!! It makes me feel small and helpless. My son just turned 16 months old and was diagnosed with type 1 three weeks ago. Yes, it's crazy! Yes, it's still a huge shock for everyone! Yes, there is a huge learning curve that comes with diabetes! But that's ok!! Once we get over this initial hump, we'll be fine. We'll be more than fine. He will live a completely normal life and do whatever it is that little boys do. This will absolutely not stop him or us, ever. It may have slowed us down for a bit but that's just temporary. So please, no pity. And for what? There are so many tools out there for us to help our children live completely full and normal lives. So pity.... There is no need. I consider ourselves lucky, in fact. Many out there live with much worse things and still find a way through.
    My family is all here and we are all doing just fine.

    Maya

    Mom to 16 month old boy, diag 1/27/15
    Lantus +Humalog
    Dexcoming since 2/19/15
    Starting animas ping 3/3/15
     
  8. MayaNYC

    MayaNYC New Member

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    Sprocket, those are absolute words of wisdom!! Yes diabetes sucks!! But my son does not have a "disease"! You are absolutely correct to equate it to things like celiac or thyroid issues. They are not diseases, just a new way of taking care of yourself.

    Maya

    Mom to 16 month old boy, diag 1/27/15
    Lantus + Humalog
    Dexcoming since 2/19/15
    Starting animas ping on 3/3/15
     
  9. msschiel

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    I agree, there are a lot worse things that kids and adults can get. Diabetes is manageable, but it is still a pain some times. I would like to be able to feed my child without having to worry how many carbs are in it, remembering insulin and other supplies, having to test so often when sick or active. However, my dad was diagnosed at age 11 and I grew up with diabetes. It was just part of life. There is so much to think about and remember, but you just do it. Treatments are so much better than when my dad was diagnosed. He never got his first meter until I was probably 9 or 10 years old and only took 2-3 shots a day for the longest time. Yes, more shots is a pain, but it is much more manageable that way.

    I couldn't imagine having to deal with an infant or toddler with D. We have said that we are thankful that our son that has D is the one that got it. Our older is scared of needles and the youngest wouldn't eat the way he is supposed to (he likes to sneak food). My D is very compliant and rarely eats something he isn't supposed to. A friend tried to help shortly after diagnosis saying that his friend's son was cured by taking supplements. If that was the case, shouldn't everyone be cured??? People are also ignorant to the differences in Type 1 and Type 2. So different in so many ways.

    it is a day to day struggle, but it could be worse!!! Hang in there.
     
    Last edited: Feb 27, 2015
  10. Sarah Maddie's Mom

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    I added the bold but I hate this line of thought. Do you imagine that kids dxd too young to remember life before Type 1 fail to notice the freedom with which their friends live? Please. I hear this from people who know nothing about life with Type 1 but you'd think that having a type 1 kid would be enough to squash this sort of thinking.

    And for the record, I absolutely consider Type 1 a disease: not for pity, not for drama but because it is.
     
  11. msschiel

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    I didn't mean to offend. I am sure it isn't easy for a toddler to understand what they are going through or for the parent to have to deal with it.
     
  12. Snowflake

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    Thanks for saying this.

    I won't attempt to change minds, and I understand that there's a healthy attitude underlying the other posters' perspectives, but, yes, Type 1 is a disease. And it's not for nothing that "celiac" is actually commonly referred to as "celiac disease." Manageable diseases, yes, autoimmune diseases, yes, but still they are diseases.
     
  13. Christopher

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    I think whether you call it a disease, an illness, a pain in the ass, whatever, it is all semantics. Whatever feels right to you is what you should call it. I personally agree with Sarah though and consider it a disease. And Type 1 diabetes does fall into the definition of a disease:

    “A disorder of structure or function in a human, animal, or plant, especially one that produces specific signs or symptoms or that affects a specific location and is not simply a direct result of physical injury.”


    “Disordered or incorrectly functioning organ, part, structure, or system of the body resulting from the effect of genetic or developmental errors, infection, poisons, nutritional deficiency or imbalance, toxicity, or unfavorable environmental factors; illness; sickness; ailment.”


    As for the reactions that you encounter from various people, strangers, friends, family, etc. I believe most are well meaning but just do not have the detailed knowledge, or day to day experience of what it is like to live with this disease. Think about it: before your child was dx, I would bet most of us were as “ignorant” about Type 1 diabetes as many of the people we run into. I know I was.

    I also think most of us go through different stages of reaction to those types of comments. In the early days we may be hurt, outraged, stunned by the seemingly hurtful or ignorant things that are said to us. Then there is the education stage, where you realize that the comments are usually borne out of lack of knowledge, so you try and educate everyone you come in contact with about what it is like to live with this disease on a daily (and nightly) basis. Then there is the final stage, which I call the S and N stage. When someone asks how your child is doing you just Smile and Nod and say they are doing just fine, thank you. It is just a way to avoid the aggravating comments. :)
     
    Last edited: Feb 26, 2015
  14. acoppus

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    Exactly how I feel on both counts, having a child diagnosed at age two.
    Thanks!
     
  15. njswede

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    The most annoying ones are the supplement peddlers and self-proclaimed health gurus. We have a "holistic nutritionist" in our social circles who's insisting that if we just attend her seminar, we should be able to "reduce or eliminate the insulin". Part of me laughs at the fact that someone who claims to be a health expert doesn't seem to understand the difference between type 1 and type 2, and the other part of me is infuriated over people giving casual (and incorrect) advice for a condition that's life-threatening if not treated correctly.
     
  16. jenm999

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    Yes, I have a "just heal your gut with my cookbook" acquaintance. Infuriating!

    The understanding/pity thing is a fine line. I also get frustrated that people don't get it or think "the pump does all the work," but then I remember how little I knew about this disease before my son was diagnosed. It has taught me empathy for sure; you never know what someone else is struggling with.

    But every once in a while someone will say just the right thing. My son reconnected recently with a friend who had transferred to private school and the parents said very clearly, "We love L and we want to learn how to care for him. Teach us." and after having him over for an afternoon said, "We can only imagine what this is like for you day in and day out. Hat's off to you. We are so happy to be trained, though, so we can still have him over because he's a great kid." That makes up for 10 people asking if we fed him too much sugar.

    I am OK with the word "disease." It is. I generally prefer the more neutral "condition." HATE "disability" which our school social worker kept using in our 504 meeting. I think a lot of it is the attitude you model for your kids. We try to acknowledge its inconvenience while stressing that he can do anything and eat anything, just needs a little planning. I call it healthy with a small asterisk.
     
  17. msschiel

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    As I said before, my dad is a diabetic and I never really understood what all was involved until my ds was diagnosed. So much to remember and think about. I am glad that family and friends aren't scared to take him because of his "condition." My D son has a friend with lots of food allergies and another condition of the esophogas. I was a bit scared the first time we had him over, but he knows what he can and can't eat. His mom even said that he doesn't get asked to friend's houses a lot because of his allergies. He was happy we invited him over. This is the same friend that my son went to his sleep over for a birthday party shortly after he was diagnosed. I was terrified to let him go, but everything went well. Yes, it is a disease, but it is manageable. There are so many other things that aren't treatable. I remember how scared I was when my dad's sugar would go too low when I was a child. Thankfully it wasn't very often, but it was still scary.

    I really didn't mean to offend anyone with my other comment and will go delete it now. I hate diabetes just as much as anyone on this board. I hate having to poke my son 7-10 times a day for sugar checks and hate having to watch himself give shots and worry about what number is going to pop up. Sometimes I am not good about putting my feelings into words. I feel for those that have kids diagnosed at such a young age.
     
  18. Sarah Maddie's Mom

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    There is no reason to delete anything. We are a disparate group, in the end the only thing we all have in common is our children's diagnosis. That we sometimes disagree is to be expected. Your opinion is as valid as mine or anyone else's and you don't have to apologize or delete anything. If anything, the threads in which people express differing views are the most valuable. If we all spoke in lock-step it would be a pretty useless forum.
     
  19. msschiel

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    I can't delete it from the other posts anyways because it was quoted. I have found more information on this board than I ever could from the endo's office. It is nice to have somewhere to go for information and just to vent.
     
  20. njswede

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    I don't think anyone was offended. At least I wasn't! :)

    I'm OK with calling it a disease, but my son isn't sick. See the difference? Yes, he's got this thing going on with his pancreas, but he's a strikingly handsome, smart, athletic, fun and HEALTHY little boy.
     

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