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Angry and tired of hearing other people telling me "it's not that bad"

Discussion in 'Parents of Children with Type 1' started by eloquine, Jan 26, 2014.

  1. eloquine

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    Just ranting, but I've had enough.
    I am sure other parents have heard it over and over again. People close to me, family and friends, strangers often tell me "it's not that bad, it's JUST diabetes" or "he could have leukemia, or something worse". It makes me so angry and sad. Yes, it could be worse, but it could also be so much better !
    I want to tell them how bad it is sometimes.
    What would you want other people to know about how bad it is for your family ?
     
  2. Nancy in VA

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    It is tough to hear that and its definitely true that people just don't get the effort that goes into managing diabetes. If they seem genuinely interested, at times, I will share with them some of the struggles of managing diabetes. And, its definitely a life long disease for our kids to live with, and the long term repercussions. But, I know a number of families with kids with cancer - one recently losing their 13 year old son to a brain tumor. No matter how bad I've got it, I would never trade places with them. So, honestly, they're right. Its not cancer. It could be worse. I know cancer sufferers in remission that live life normally every day - but the parents know that it could come back at any time and still kill their child. And yes, I know that diabetes can kill our children as well - having lived through 2 seizures with Emma that made me think about her mortality. But, as bad as I do have it, my child is here with me and laughing and having a full life - living with diabetes - when there are so many others whose children aren't. So I smile and tell them how lucky I am that my child is healthy and happy and diabetes is just part of our family life. And I think God every day that she's here with me.

    But I've been at this for almost 7 years now - it took me a while to get to this point. You're not wrong in your feeling that people don't get how hard it is for you and your family - because it is. But I encourage you to find a way to embrace this new normal for you and your family and just know that the people that matter know how hard it is for you and support and love you, and the rest don't matter - and be thankful every day that your child is here!
     
  3. KHS22

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    I hear you LOUD and clear. Especially because my husband is T1D and I'm a nurse practitioner, people are like "you can handle it". And don't get me wrong, I am SO GRATEFUL that I already had a clue about diabetes. However, she is 3. This adds its particular struggles. Running back and forth to work to do her insulin shots, having to rearrange care as some people won't deal with diabetes, etc, its been stressful!! Also, she's my kid!!! I'm allowed to feel sad, or overwhelmed or angry if I want. Stop saying its no big deal!!!!!

    I feel your frustrations!!
     
  4. Sarah Maddie's Mom

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    I know that my non-D friends don't fully comprehend what it is to be a pancreas, but I'm thankful that in 11 years no one in my circle has ever said anything like that to my face. I'm sorry you are hearing such things.

    As to letting others know "how bad it is"... well, I'd take care here. I don't know how old your child is, or how long they have been Type 1 but I think our (the parent's) attitude toward diabetes inevitably gets back to our kids. There is really no way for someone who isn't living it to understand the hyper-alert 24/7 nature of the disease, at some point you just have to let it go.
     
  5. moco89

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    Tell them that you do not know what I/we go through due to this disease and leave it at that. Also tell them that you do not appreciate unsolicited advice (although they are trying to be "compassionate and helpful") regarding your perspective of dealing with diabetes as a disease/condition.

    You do not need to justify why diabetes is bad--or "not that bad". Don't go there--that is beside the point, when the comment itself was out-of-line. This should not be a pity contest and people should mind their own business.

    I understand that you want people to be compassionate and to understand, but when somebody makes an inconsiderate remark, such as the ones you have stated, they do not have a willingness to understand or learn at that point of time.
     
  6. Mish

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    I don't even bother getting into that sort of debate with people. Life shouldn't be a contest as to who has it worse, and no one should be saying "it's JUST diabetes", but I can only choose to control my reaction, my view about it.

    Sometimes you really do have to look on the bright side and realize that while you have a giant struggle that you don't want, it might be a minor struggle compared to what others are going through.
     
  7. Beach bum

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    Oh I hear you! Nearly 9 years in, we still hear "it could be worse." And trust me, I know it could be worse, but there are some days when diabetes has kicked us in the butt so badly that I feel there is nothing worse than it. The latest was the triage nurse when I had to take my daughter in recently for a foot injury. I actually lost a friend over diabetes. She would always say it could be worse, and then would always question what I was feeding my daughter and then said, well, she will out grow it. And this was from a highly educated woman. I'm sorry, but if I had a close friend who's child was diagnosed with a serious condition, the first thing I would do is read up on it so I'd be familiar with what was happening. We just drifted apart because of this.

    I will only tell close family/friends (who really get it) about how bad it is. If I need to vent, I tend to do it here. Plus, by venting here, people may give suggestions as to how to solve the problem we are having.
     
  8. swellman

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    I don't know ... my wife and I still tell each other it could be worse.
     
  9. hawkeyegirl

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    My husband and I occasionally muse about how it can be that diabetes can suuuuuuuuck so much, and at the same time not be that bad in the grand scheme of things.

    Here's the thing. In 6+ years of diabetes, I don't think I've ever had anyone tell me that it's not that bad, or it could be worse. I think a lot of that has to do with the fact that I don't talk to anyone about it. Everyone has their own crosses to bear, and no one wants to hear about mine. And if they don't live with it, they're truly not going to get it. I would frankly stop talking to people about diabetes, because they're just not going to get it, and that's okay.
     
  10. shannong

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    I think I have really got to the point where I just don't expect people to get it, unless they are actually dealing with Type 1 diabetes. I do have good friends however who do definitely try and understand and offer support. Diabetes is really such an invisible disease. I think because of this, people just assume that it is an easy one too.
     
  11. KHS22

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    And I think this can be helpful too... because wallowing in self pity isn't helpful either. But, you and your wife saying it to each other is different beacuse you live it and, you still know it could be worse. Others, sometimes it seems to come from a "whats your problem" point of view more than anything. KWIM?
    Good point... And in some ways I'm glad its an 'invisible" disease...
     
  12. sszyszkiewicz

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    I think most people get squeamish about any disease in conversation. They try to relate, or try to brighten your outlook, or something because they feel awkward. A good friend of mine started going on and on about her cat being sick!!!!
     
  13. Don

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    People certainly mean well but the hit on my QOL and the financial burden are bad enough without the aggro of talking to the blissfully ignorant.
     
  14. Sarah Maddie's Mom

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    There was just that big brouhaha about that cancer blogger - was it in the Guardian? Anyway, my 2 cents, your disease is only interesting to other people who share it. Chronicling the ins and outs of any disease is not something that those uninitiated can understand or really have much interest in. Expecting them to get it, or even to really want to get it, is a mistake.
     
  15. susanlindstrom16

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    I agree with this, I think a lot of times its just that people don't know what to say. I think I have more often found myself in the opposite situation, where people are like "oh poor thing! how can this happen to such a sweet little girl?!?" and I'm the one telling them, its ok, there's all this new technology, she is really thriving, blah blah blah. lol
    and by the way, my coworkers cat has diabetes! so we have talked about it on occasion. although she definitely doesn't compare our situations, it is kind of funny though.
     
  16. Guru_rb

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    Hi All,

    It's my first post here and my experience has been similar to the above member. Especially, being in India, very few people around are aware of the technological advancement that has been happening and the therapy options available. Here at least, it is made out to be a much bigger problem than it actually is. I know that I am too new to this (just 3 months) and have not encountered many complications that most of you here have. But the way I would look at it is, once I know that it is going to be a 24/7 affair for us, parents, let's look at the brighter side of it.
     
    Last edited: Jan 27, 2014
  17. KatieSue

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    I put the could be worse comments in the same category as the people who have some sort of supplement that will "stabilize blood sugars" . I just had one of those discussions this morning. No one is saying these sorts of things to be mean I'm sure they think they're helpful. So I just politely say thank you and move on. It's really not worth the discussion to try and make them understand.
     
  18. Don

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    Yeah, you really can't understand unless you live it (PWD or caregiver of PWD). Before my dx, I certainly had no clue.
     
  19. mamattorney

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    I think as a parent I walk a fine line. I paint a rather rosy picture of it myself to anyone who comes in contact with my daughter. What good would it do to explain the minutia to someone? Garner sympathy for myself as the prime manager of the condition? A little sympathy is not worth it if as a result, someone would think twice about including my daughter in an academic, athletic or social event for fear of being "responsible" for her. I'd rather vent to people who "get it" rather than people who might be freaked out.
     
  20. MEVsmom

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    I haven't had anyone say that to me, but if you are in the position where one of your children does have something much worse you feel differently about it, at least I do. My older daughter has a terminal, neurodegenerative condition. There is no treatment. There is no cure. She was born normal and healthy and stayed that way until she was three. I have watched her die a little more each day for the last 7 years. She can no longer, walk, talk, eat by mouth or even voluntarily move her her arms and legs. She is blind and she smiles maybe once a year. Her life is expectancy is 8-12 and she is 10 1/2 so, to me, no diabetes really is not that bad. When people say, "It could be worse." I truly know from experience that it could be.

    I get aggravated the other way when people are like, "I'm sick of hearing that there's going to be an artificial pancreas. I've been hearing that for 20 years." At least there is a way to manage my younger daughter's diabetes. At least there is hope on the horizon. At least there is money for research. No, I'm not happy about it; no, it's not fun, but Batten Disease is genetic. My younger daughter is a carrier. She could have had it too. T1D is not as bad as that. What I was most upset about was that my daughter had one more thing to make her different and one more thing to deal with. She is a strong, but how much is 8 year old supposed to be able to handle.

    While I say this, I do understand that you can only appreciate the things that happen in your own life. If I had two healthy kids when my daughter was diagnosed with T1D, it would have been devestating to me as well and I completely realize that. I might be consumed by it, but I can't be. We just keep on keeping on and keep Maison's topsy turvy life as normal as we can.
     

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