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30 Responses

  1. kdroberts
    kdroberts February 5, 2010 at 6:57 am | | Reply

    I feel your pain. I get the “You’re allowed that?” line from various family members, it does annoy me. Unfortunately no matter how many times I (and other people) explain what diabetes is there seems to be a mental block. Even now, several years after diagnosis and after several dozens of explanations from various people I still get the odd conversation that goes along the lines of

    “How’s your sugar?”
    “Good, it’s under control anyway”
    “Oh, good. So that means you don’t have diabetes anymore?/It took a while but I knew you could get rid of it”

    It seems the concept of an incurable disease that needs monitoring and treating multiple times a day doesn’t compute with several family members. It was hard enough to get them to understand that blood sugar changes all the time in everyone and isn’t just a number that stays static!

  2. saramy
    saramy February 5, 2010 at 7:46 am | | Reply

    Oh yeah – the judgement is terrible! Diabetes, all types, is custom fit for it because in our society many believe we can and should be in control of everything. I think the judgement, in part, comes from ignorance and maybe even fear and the added highlight of a feeling of superiority. Like a friend of mine who loved loved loved chocolate who claimed “if I had diabetes, I’d never eat another candy bar in my life”. Really? judgement in that statement? Ignorance, superiority without having the walk the talk? We look kind of normal, and if we’re basically in control, people think it must be easy. And blame, no matter how subtle, takes much less work than compassion and understanding for how truly difficult it is. No one likes to be judged, but control of diabetes is just too easy to judge. Do you notice that most judging comes from people who have NO IDEA at all and have probably never had a chronic or life threatening condition (and that includes most doctors and nurses who would rather blame than admit that the tools we have are so not adequate to the job we have been given).

    I honestly want to thank all those people for giving me the opportunity and challenge to stay balanced in the face of their ignorance and judgement. ahhhhh.

    I hear ya’ Amy!

  3. Heidi
    Heidi February 5, 2010 at 8:11 am | | Reply

    I am so glad you posted this.. I am a mom of a diabetic, and people especially my BOSS, who is not a nice word… makes comments ALL the time. It hurts, we try our best.

    I will have to be more careful for what I say around Mattie (my diabetic) I hope I have never said anything that would hurt her feelings. I will NOW ask her and we will talk about it, so I don’t make her feel like a failure, the way others make me feel as her mom.

    I think here is the best place to share your frustrations, just today I posted about the mean things my boss has said about me and Mattie. I hope today you have a better day..

  4. Doug
    Doug February 5, 2010 at 8:36 am | | Reply

    Amen. Amen. Amen.
    I’m a firm believer that the mental burden of T1 is overlooked.
    These kinds of comments are unfortunately expected from people who dont understand, but your Drs staff should know better. Having said that they probably see people all day every day who DONT know what their last A1c is and dont know what it means and therefore NEED the lecture..

  5. Val
    Val February 5, 2010 at 8:37 am | | Reply

    Oversensitive? Hard to say. If we ever had time off from diabetes, maybe we could say we were oversensitive about little things that really weren’t meant as judgemental. But, let’s face it, we’re like camels with little tiny straws added every single day. Every day. Forever. It doesn’t have to be some idiot telling your their diet plan will cure you – it can be just a sideways glance at your meter, or a test strip falling out of your car.

    Every once in a while, they just hit the “too much” point and we dump them out over ourselves or whoever or whatever happens to be nearby (see my post from yesterday).

    Unfortunately, all that happens when we shake off this load of straw is we stand back up and the next load begins.

  6. Autumn
    Autumn February 5, 2010 at 8:49 am | | Reply

    I agree. I’m 17 weeks pregnant with our 1st child. Everytime I go in for my appointment with the perinatologist I sit and wait to see if my non- stop efforts to keep my diabetes in check will be praised or put down. My husband is also usually a rock of support but even he has moments. Like when he asks “What do you think you should do about that?” after I’ve had string of lows that seem to come out of nowhere. I respond with “I don’t know.” because that’s the truth. That is when diabetes feels most isolating. I want someone to give me the answers instead of having to figure them out myself at each and every meal.

  7. mollyjade
    mollyjade February 5, 2010 at 8:56 am | | Reply

    I have two close friends, one who also has type 1 and one who doesn’t. We all ate ice cream together once. I had my half cup, the two of them each finished a pint (and the non-diabetic one teased me for stopping at a cup.) Now the non-type 1 friend keeps bringing up our friend “the bad diabetic” based on this one incident.

    No matter how many times I correct her, (She’s not a bad diabetic, She made a bad food choice, the exact same bad food choice YOU made,) I just can’t get it through my friend’s head that her judgment is misplaced. I’ve made similar bad choices in my life (who hasn’t?). She just hasn’t witnessed them. It’s incredibly frustrating.

  8. Arielle
    Arielle February 5, 2010 at 8:57 am | | Reply

    My husband tends to do something akin to your last example; he’ll criticize my friends and family for their numbers, always ending with the implication (sometimes spoken, sometimes not), “YOU’D never do anything to give you numbers like that.” And I want to say, “Yes, sometimes I do! It’s not always easy!” The other day he actually said, “Well, you’ve never been over about 220 since I’ve known you.” (ie, the last five years). I said, “If you actually think that, you’re crazy.”

  9. Carol11
    Carol11 February 5, 2010 at 9:13 am | | Reply

    Exactly. Which is why I don’t tell anyone and why I live alone

  10. Michael Ratrie
    Michael Ratrie February 5, 2010 at 9:14 am | | Reply

    Amy,

    I’ve said this before and I’ll say it again, in the words of YDMV’s Bennett, “LYMI”!

    I wasn’t there (obviously!), but I would interpret your husband’s comment as empathy. As in, “I can’t truly know what it is like to manage T1, but I DO want to be there for you.”

    As for the office manager…Hello?! No explanation, just a rude and really unmotivating way to present the number.

    For me (and maybe I’ve already posted this), I just try and think of the numbers as just that. They are NEVER good or bad, just numbers. They can help me manage, but they are just a tool. Anyone who thinks they can know or judge me by the numbers had better be prepared to listen to silence as I walk away.

    Fair Winds,
    Mike

  11. Penny
    Penny February 5, 2010 at 10:22 am | | Reply

    Oh how I can relate to this as a parent of a Type 1. I have never had such scrutiny over my parenting skills as when I am parenting my 3rd, who has Type 1. You’d think I was raised in a cave the way people talk. ‘Why did you let her have that cupcake?’ ‘She can’t eat that!!!’ ‘She should be eating her veggies instead of the cookie.’ – Sometimes, honestly, I wanna go ballistic at them, but usually I retort with some explanation about Type 1, I am dosing her, she can diet and exercise til she’s 80 – still gonna be diabetic, etc.

    People don’t know how very hard it is to carb-guess all the time, to control what a 7 year old eats and when she eats at times, to monitor, monitor, monitor, all while actually trying to have a life that has two other kids, a hubby, a dog and a cat and well, LIFE in it. I wanna suggest that those people who criticize try it some time. 24/7/365. We will see how they fare.

    Then I think about the subtle ways I inflict it on my 7 year old, and it hurts my heart. The statements that say to her that her number is too high. That look on my face that says you really wanna eat that? And I notice myself stopping more and more. I need less judgements and more love for her and her Type 1. I need to put myself in her place again and again, to tell her I am trying to understand, that I don’t wanna be the Mom who judges in her life. That I know it must be hard and I am always here to help you, not scold or judge or criticize. We have the rest of the world, outside of the DOC, for that.

  12. Jana
    Jana February 5, 2010 at 10:41 am | | Reply

    For the people closest to me, I sometimes wonder if they think about the fact that they are adding to the load of guilt that I already feel about having failed another guessing game that is everything I put in my mouth.
    Thanks for letting me know that I am not the only one who feels like I am overreacting!
    j.

  13. Jennifer Wickman
    Jennifer Wickman February 5, 2010 at 11:57 am | | Reply

    The timing of this post is very apt for us here in Madison, Wisconsin where the poster child (literally) of type 1 diabetes died Tuesday night. Jesse Alswager was 13 years old. Diagnosed at age 3 he spent the last ten years of his life fighting the disease on every front. His obituary lists his death as due to complications from diabetes; but I think he suffered a severe low blood sugar, was down too long, and could not recover.

    People without diabetes keep asking me what went wrong. And when I try to explain, I get “you mean he got too much insulin?” As if a mistake or human error is responsible for his death. Type 1 diabetes killed him. And when the best advocate for diabetes, a kid who wore a pump and used a CGM, dies from the disease — it’s should be clear what a hideous, cruel disease it is. — Jennifer Wickman

  14. Kendra
    Kendra February 5, 2010 at 1:13 pm | | Reply

    I don’t have any clear thoughts after reading your entry that I could express without typing a bunch of four-letter words — but I do have this heavy, dull feeling of pain/anger/shame/disgust in the center of my chest. It sucks, big time. Hugs to you, Amy (and to your CEO acquaintance).

  15. Beth
    Beth February 5, 2010 at 1:30 pm | | Reply

    As the mom of a 5 yr old with T1D, I am so sorry to hear that you are on the receiving end of this type of judgment. No one could ever imagine how hard it is to balance blood glucose values constantly, unless they have T1D or take care of a child with it. People don’t understand what the pancreas does, and they don’t understand how PWDs live with a pancreas that doesn’t produce insulin! 154 is a good BG value, I wish my child could maintain her BG at that level. The swings are so hard on her.
    6.7 is a good A1C, too.

    There are lots of things I hate about T1D, but one of them is, I am reluctant to share anything about my life or my daughter with others because they don’t listen, they still hold onto this idea that we somehow control this condition. Does anyone control any of their internal organs, or the hormones produced by them? We do our best, and it’s not good enough, but it’s all we have right now.

  16. Hudson
    Hudson February 5, 2010 at 2:25 pm | | Reply

    Thank you for this post. My son is T1 and though not often critical, I will now make it a point not to be so critical of him when his numbers are off. Thanks again.

  17. Josh
    Josh February 5, 2010 at 3:50 pm | | Reply

    In the 23 years since I was diagnosed as T1, I have learned that most people are ignorant towards it, and either 1) mean to make you feel guilty, or 2) lay on a guilt trip without realizing it — both of which are bad! My main defense mechanism to not deal with those people and their ignorant comments by keeping my diabetes to myself. Not hide it exactly, but intentionally not make it a conversation point. Be judicious about who I tell about it. Obviously this won’t work with spouses and close family. Close family usually mean well, like you mentioned, so you should cut your husband and yourself some slack. Frankly, I ignore my sister-in-law’s silly comments, she just doesn’t understand. You’re never going to be perfect. You’ll always have a random BG that is too high or too low. You can’t eliminate them, you just have to work hard to reduce their frequency — which of course you know! Ignore the nurses, they’ve been the worst at the guilt trip in my experiences! 6.7 is good, mine float around in that vicinity :)

  18. Niki
    Niki February 5, 2010 at 4:09 pm | | Reply

    This post is the explanation of so much of my life. Thanks for putting it into words better then I ever would.

    There is a reason why I don’t talk about diabetes with my family or really anyone for that mater.

    I think diabetes is something that is almost impossible to understand unless you have it. The people I respect the most know that.

  19. Niki
    Niki February 5, 2010 at 4:18 pm | | Reply

    PS. We are A1c twins and well I would love something lower I was expecting higher and was happy.

  20. xim1970
    xim1970 February 5, 2010 at 9:21 pm | | Reply

    I agree with everyone who commented above and don’t believe that I can say anything that hasn’t already been said. AMEN sister!

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  22. Antigonos
    Antigonos February 6, 2010 at 5:20 am | | Reply

    Right now I’m wrestling with issues with my doctor, who is fanatic on keeping me so strictly controlled [I'm type 2] that, to meet her A1c expectations I have 4-5 hypo attacks a day, some when driving, which has scared me to death. In spite of the fact that she knows that I’m a nurse, with a working schedule which leaves no time for “healthful exercise”, or eating regular, well-balanced meals, or, with a growing family, much time for anything at all, she constantly makes me feel almost criminal for having “only” moderately good control. [A1c about 7-7.5]

    Right now, in the aftermath of a fairly serious bout of the flu, my numbers are not particularly good, and I’m actually scared to go see her.
    I think it is time to change doctors, but in the Israeli kupat cholim system [rather like an HMO], that’s easier said than done. No one ever seems to be able to say “Given that you can’t stop for even a snack between 2 p.m. and 9 p.m., you’re really doing quite well” or anything like that. Very depressing.

  23. Dan Patrick
    Dan Patrick February 6, 2010 at 5:40 pm | | Reply

    Hi Amy,
    It is my observation that stupid is an action whereas ignorance is a lack of knowledge. It is very easy to take actions for granted and not realize the work…I mean work to maintain and be on the offensive with positive actions regding the management of our condition. We need to love the sinner and forgive, while continuing to work on the the minimization of the sin. Hope you are feeling better to know that you are not alone in your thoughts and feelings. As always have a great day.
    Dan

  24. Leslie
    Leslie February 6, 2010 at 9:26 pm | | Reply

    I read this and my heart dropped… I am guity of these comments to my husband and never ever meant them to be harmful. I am completely ignorant on diabetes and have no clue where to begin to learn about this disease that my husband and two step-children suffer from (which is why I started reading your website). I am going to work on this and try to be encouraging. Thank you for sharing!!

  25. Enough to go around!
    Enough to go around! February 8, 2010 at 1:16 pm | | Reply

    The one thing I’ve learned about this disease is that it seems to spread guilt around. I’m not the PWD–I’m the spouse–and the one who does most of the cooking. I’m forever worrying ‘maybe this isn’t low carb enough’ and so on. I also worry about holiday meals, since I’m cooking for a wide range of people I have a mix of dishes. I’m then worried that other family members will judge me for putting something too high carb on the table.

    There is another way to look at your husband’s comment–you are so tightly controlled he thinks 150 is high!

    Hugs to everyone who feels the sting of subtle accusations.

  26. Kara
    Kara February 9, 2010 at 8:23 am | | Reply

    I can relate completely! My life with T1 has been such a rollercoaster – diagnosed as a teen who simply didn’t care and tried to ignore the disease (you can guess how well that turned out!), and now I’m in my late 20s, just trying to manage it all. I found out I was pregnant in December, which added a whole new level of crazy to the mix. I was so proud that, after only 2 weeks, my blood sugars seemed to be well-maintained again. I miscarried 2 weeks ago, and I’m dealing with a sudden jump in my blood sugars this week. My husband freaked when he saw my 206 reading last night – and I freaked too, but because I saw it as a sign that I’m truly not pregnant anymore… and that everything about my body is truly out of my control.

    I know that I don’t always make the best food choices… getting The Look from my friends when it happens almost makes me want to rebel and eat worse – but a rebellion against my own body won’t get me anywhere!

    I love your blog… I found it just a few weeks ago, and it’s been amazing for me. Thank you for sharing your experiences, your feelings, and your extensive knowledge.

  27. Greg
    Greg February 10, 2010 at 11:18 am | | Reply

    I learned long ago to be my own judge. Comments from others deserve one of two responses: 1) Ignore them in their ignorance because, frankly, it’s not worth the effort or 2) Education, for instance in the comment from your likely well meaning husband. Hanging on others’ every word or perceived glance is a one-way ticket to misery. Excursions from ‘normal’ glucose levels are inevitable, and trying to completely eliminate them will only result in repetitive feelings of failure when the situation does not warrant it. You clearly are following the right PROCESSES to manage things, and an A1c where you are at is well below the average in the DCCT trial that supports glucose control. Many experts think that going lower than where you are is dangerous. So forget all of those people and live your life. To spend time worrying about ignorant opinions is no way to sustain chronic control of a chronic, life-long problem. The more of us who hear that, the better!

  28. Kameron Hurley
    Kameron Hurley February 11, 2010 at 6:41 am | | Reply

    This is not oversensitive at all. When I went into see my eye doctor, she asked me what my morning blood glucose was. “155,” I said.

    “Is it usually that high? That’s really high.”

    You know what I wanted to say? “F–k you.” Instead, I said, “No, it’s not usually that high.”

    I get so angry at people who don’t get it. Lots of folks get after me because I don’t eat this or that or the other thing, and then express shock when I have a number over 100. 100!!! And I want to shout, “See, folks, this is why I avoid all those carbs you nag at me for being so `strict’ about and work out 5 days a week and test 10x a day. You think this is EASY?”

    All people see is one number. They don’t have to watch you rollercoaster. Only my spouse has any idea how hard I work for those numbers, and that’s because he’s had to alter his diet, too. And the whole, “I really, really want to have sex tonight but I was at 50 after dinner and my blood sugar is still plummeting and it’s just not going to happen” thing does put a damper on things on occasion. Even then, he’s not testing 10x a day and worrying over every portion.

    Anyway. I just wanted to say, no, you are not crazy and oversensitive. People have a tough time understanding what diabetes (especially type 1) really *is.* My dad once told me that he considered cancer to be much more serious than type 1 diabetes. I just stared at him. “You realize a lot of cancer can be cured, right?” I said, “But that if I don’t have insulin because I get trapped somewhere or travel to some place and lose my supply… I die in 12 hours. You KNOW that, right? I WILL DIE without access to insulin.”

    They really don’t.

    I think some of this is because most doctors really don’t understand it either. When I relied on a doctor to tell me how to manage my diabetes, I was wildly out of control, eating at least 3 servings of carbs at every meal just like the dietician told me, and was totally miserable. It wasn’t until I read The Diabetes Solution (you know, by somebody who actually lived with t1), that I was finally able to get things under control. I had to teach *myself.* Nobody was going to do it for me.

  29. affiliate
    affiliate February 24, 2010 at 11:53 pm | | Reply

    6.7 is higher than 6.4

  30. Scott K. Johnson
    Scott K. Johnson March 6, 2010 at 1:12 pm | | Reply

    Amy, this is a great post and a great topic. It is times like you mentioned where my buddy always (partially) jokingly says “how ’bout I rip YOUR pancreas out and see how YOU do?”.

    It is really terrible how we are criticized so harshly, even by people who SHOULD know better, for the times we are less than perfect, but being perfect 100% of the time is totally expected of us. Sheesh.

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