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16 Responses

  1. Elizabeth Joy
    Elizabeth Joy February 20, 2009 at 8:58 am | | Reply

    I’m recovering from a low of 38 right now, so hopefully this ramblinb post makes sense…
    :)

    I think all type 1′s have been there, getting the “bad diabetic” comment, and probably all of us get a little PO’d about it, since it feels like we’re being blamed for having to take insulin. (Ironic that it happened to you at the gym.) But as you know, most people are only aware of type 2, and so are going to make assumptions. I make a point of educating everyone who asks, and I think if we all did we could really make a dent in the ignorance. But I completely understand how it can feel like a burden to have to educate people, when you just want to get on with living a normal life. It’s obviously not an obligation to educate the world, and when you don’t feel like it there’s no reason for you to take the time. (In this case, though, maybe it would’ve made you feel less angry, helping her understand and ensuring she really didn’t blame you.)

    As for the general ambiguity, I was diagnosed when I was 2, so I don’t remember life without diabetes, and it really is just routine. I rarely get angry at the disease, it’s just part of who I am. I’ve told many people I think it’s much harder for those of you diagnosed as adults, since this awful thing has suddenly been placed on you. I imagine the anger I’d feel if I were suddenly diagnosed with lupus or MS–Your life is suddenly filled with difficulties and worries you never had before, and it must feel so unfair. Hopefully writing about how you’re feeling helps–That’s the only way I think I’d be able to get through it, working through feelings online or on paper, trying to make the feelings less intense.

    As far as interactions with the people around you, I’m lucky that for the most part my friends and family let me deal with my own control without trying to make suggestions, not even really talking to me about what I’m doing but just accepting that I know how to take care of things on my own. It’s important, I think, to tell people how much support you want, especially the people you see every day. If there’s something you’re not getting from them, they’d probably be really receptive to hearing what it is.

    And as far as getting a pat on the back for how well you’re doing, I think there’s nothing more important than giving yourself that pat on the back. Get a good A1C and celebrate by buying yourself something nice, or even taking a long bubble bath. Nobody else is going to understand how difficult it was, and how hard you’ve worked. I’m a big proponent of self-care, even when it feels selfish. The days I don’t give myself a break, my mental health (and sometimes physical health) suffers.

    So here are my “kind words” to you. You’re doing an awesome job, Amy, with everything that’s been put on you, and on top of that you’re an inspiration to others. Kudos, girl. You rock.

  2. riva
    riva February 20, 2009 at 11:28 am | | Reply

    Amy, I’ve nary heard it expressed so well how we feel living with diabetes. And no, you are not alone. A few nights ago I was out with girlfriends and I heard myself say, “I feel so invisible. We adult type 1s are the most invisible group among diabetics, neither the overweight older type 2s all over the TV or kids all over Novo Nordisk ads. (In fact we were talking about a camp for adult type 1s, which I still think is a great idea.)

    Then my friend said, “Well, you’re so invisible because you take such good care of it.” I guess that’s the double-edge sword. If I take good care of it no one notices how hard that is or how much work that takes or the many times I want to shout or cry from frustration and the going unnoticed. But I guess I’ll take that over hospital stays that come with flowers, sympathy and teddy bears. Of course it would be nice a friend thought to give me a teddy bear now and then just for working like a maniac at this. But then again, it’s pretty invisible.

  3. Beth
    Beth February 20, 2009 at 11:58 am | | Reply

    I think it is time to rename either Type 1 or Type 2, because the names suggest they are virtually identical. Many news stories about “diabetes” don’t specify which type (almost always Type 2), so the confusion is only heightened.

    We were better off with the inaccurate terms “juvenile diabetes” and “sugar diabetes”, because people understood that generally children had juvenile (although it did occur in adults), and that it required insulin shots and was quite serious, and that “sugar diabetes” occurred only in adults and meant you needed to cut back on your sweets.

    The current names erase the many significant differences between the two conditions. If one more well-meaning adult tries to tell me my skinny, athletic, low-carbing 11-year-old wouldn’t have to take insulin anymore if he would just watch what he ate….!

  4. steve
    steve February 20, 2009 at 12:52 pm | | Reply

    I learned about this web site because I was checking team Type 1′s results in the Tour of California. As an older type 1 diabetic, I cycle, sometimes run and when luck nordic ski to keep fit physically and mentally. I couldn’t agree more. When people are surprised to learn that I’m diabetic the evangelist in me comes out. Only diabetics can relate to one another. Take heart, there are diseases that are worse. There will be a cure. Check out the website from the Harvard Medical School and read about the research Dr. Faustman is doing.
    http://us.mc841.mail.yahoo.com/mc/compose?to=Faustman@helix.mgh.harvard.edu

  5. Lauren
    Lauren February 20, 2009 at 5:34 pm | | Reply

    No, I don’t think we should make it our mission to educate. People don’t really care, and don’t want to hear it — unless the person is a metabolic biochemist or has been personally affected by type 1. You could lecture every single person you know, and ten minutes later they will think you’re diabetic because you ate too much sugar and didn’t exercise enough. Even my parents, who have 2 out of 2 type 1 diabetic children, a T1 mother, and a T1 sister, are very, VERY hazy on the details. Why? Because they aren’t diabetic. It doesn’t affect them.

    I am in medical school and trust me most of my classmates don’t want to hear it, even though they’ll have to learn it eventually. They want a three-word answer to “why are you giving yourself a shot?” or “what is that thing?”

    Comments I’ve heard from medical professionals and soon-to-be medical professionals alone range from “You must be really sick to have to take insulin” to “don’t you ever want to wean off the insulin?” AND, many people have said “I get low blood sugars too, it means it’s time for lunch.” No, I say, we’re playing in different leagues — my low blood sugars are a dangerous side-effect of exogenous insulin, and need to be immediately corrected.

    I did a shot in front of classmates awhile ago, and one of them recoiled in shock and asked me if I needed to lie down. I said, “I’m doing the same thing your body does when you eat–you just release your insulin from your pancreas, I have to inject mine. It doesn’t mean I’m not feeling well.” Then she said, “Oh I have heard about the pump, are you going to get that, so you don’t have to take insulin anymore?”

    I would correct people’s opinions all day long if I thought they were interested. I get very upset when I hear their comments. People think insulin is like an optional thing, something that you take when you don’t want to improve your lifestyle and get rid of your diabetes with diet and exercise.

  6. tmana
    tmana February 20, 2009 at 5:43 pm | | Reply

    Let me provide a slightly different perspective. I’m Type 2, currently off medications, diagnosed in my early 40′s. I’ve known insulin-dependent diabetics since childhood. When we see JDRF ads, we see kids with “an incurable (read: fatal) disease”; until Mary Tyler Moore put an adult face on “juvenile diabetes”, many people did not see this as something that affected adults. (And we see most adults with T1DM as not having the control issues of kids with the condition.) And most of the people diagnosed with diabetes as adults are, indeed, obese and insulin-resistant, and either unwilling or unable to make the significant lifestyle changes needed to control this condition.

    In addition, most adults not involved with T1DM management (as patient, caregiver, or professional) are not aware of insulin pumps, don’t understand what they do, and don’t understand the importance of maintaining as tight a level of blood glucose control as possible with ANY type of diabetes. And most adults are uncomfortable seeing a medical device permanently (or semipermanently) attached to another person; they see it as pain and illness and impending death.

    It really *does* take us being advocates, asking questions, and being “out” with our diabetes and our knowledge of diabetes, to change the mindsets and reactions of the “pancreatically unchallenged”. And perhaps the name “autoimmune diabetes” might have a truer ring: it is the body attacking itself; it is not communicable; and its management requires some sort of external insulin supply.

  7. Know The Symptoms Of Juvenile Diabetes
    Know The Symptoms Of Juvenile Diabetes February 20, 2009 at 11:01 pm |

    [...] » AAD Syndrome (Ambiguity About Diabetes) – DiabetesMine I know I should make it my mission to ALWAYS jump on opportunities to educate others about the types of diabetes, and what it really means to live with this illness. But sometimes I just can’t face it.  [...]

  8. Steph
    Steph February 21, 2009 at 1:05 am | | Reply

    Hey, Amy, I really like your site, and come here often. You are very open about your “D” life, and it not being perfect. I hate reading blogs by people who think their “D” life is perfect, or that they are such a fabulous person cause they have it. We all hate it, and want in to end right. You are a real person, and that’s nice to read.

  9. Romeo Thibert
    Romeo Thibert February 21, 2009 at 7:34 am | | Reply

    I love your blog because you write things like this. Wehave to educate people about the diference between T1 and T2 one person at a time. Of all the comments, the one that worries me the most is the one from the med student, but we have toremind ourselves that they are just students and she became an advocate for us by showing the other med students that we are OK and with proper maintenance and education can move our cause one step along the road we are travelling that has no off ramp.

  10. Kathy Cook
    Kathy Cook February 21, 2009 at 10:35 pm | | Reply

    Thanks for this story. I’m a type 2, so I can only imagine what it must be like to be type 1. This is not to be taken as pity. But it helped me to understand what it’s like to have to be dependent on insulin. Thanks to a good doctor, a good dietician, the Diabetic Community & this website I’m doing very well. My A1C is at 5.6. It helps a lot to be able to read these things & try to help others. I don’t spend nearly enough time on the different sites, but I’m going to start spending more from here on out.

  11. pamela
    pamela February 22, 2009 at 2:06 am | | Reply

    Love this post, Amy.

    I used to suffer from AAD Syndrome constantly, and now I only get it from time to time :) … which is not to say I don’t feel ambivalent – I do, and how! But I don’t experience the same intense reaction (or I do, but less often) to clueless well-meaning friends, family, and strangers. I’m wondering if in fact it’s a bit of a “stage” we go through — something that comes and goes cyclically throughout our lives.

    I’m 43 years old and now in my 28th year with Type One (yes, you can applaud now – you know how freaking tough that is! ;) ) (– which means I got it when I was 15 years old, which is an abysmal time to get it, if I do say so myself). Anyway, it took about a decade to “come out” and take charge of my illness. At that time, I was constantly ‘educating’ and often became annoyed at all the mistaken perceptions I was up against.
    But since my (prolonged) “diabetes warrior” stage, I’ve become a lot calmer dealing with others (geez – I hope I don’t jinx myself!). Amy, your story reminds me of many similar ones I had at another period of my life.

    Sometimes I tell people “it’s an insulin pump” and change the subject. Sometimes I say “it’s a medical device” (with a look that says – Do Not Ask Any Further). Sometimes I say, “you’ve probably seen this, no? It’s from Minimed, my insulin pump?” (I live in a busy urban area.) Sometimes I tell them, and then wait patiently for their questions. It’s so context-specific, isn’t it!

    But here’s one I just love, from our med student above: “my low blood sugar [is] a dangerous side-effect of exogenous insulin” — get me sugar fast! (hee hee – I hope they shrink away feeling awed at my superior medical brilliance!) — hey… that’s a good one for the diabetes police!

  12. pacreas_fail
    pacreas_fail February 22, 2009 at 10:39 am | | Reply

    Great post, Amy!

    I totally understand what you are talking about! There have been countless time when I have had similar conversations. Maybe we should just walk around handing out pamphlets about diabetes. I’m a pump user who checks my bg levels very often, so I’m always exposing my ‘alien’ technologies to those around me which seems to be when you get hit with questions. It seems like I end up explaining the same thing to the same people about once every 3 months.

    My list of annoying conversations/questions in no particular order:

    1) Just because I’m diabetic, my feet won’t fall off.
    2) Yes I’m diabetic and not fat. It happens.
    3) Yes I’m diabetic and not old. It happens.
    4) No, don’t give me insulin when I have low blood sugar. Please don’t give me CPR either.
    5) Because I’m diabetic does not mean I need to eat candy all day.
    6) Just because you know someone with diabetes who eats junk food all day doesn’t mean I should.
    7) No I don’t wear special socks.
    8) Yes I’m aware of sugar free candy. I’m also aware of the affects on my bowels. I appreciate the offer of sugar free candy, but would rather just have a piece of regular candy and bolus myself.
    9) ….and the candy is “sugar free”, not “diabetic”. There is no such thing as “diabetic gum”.
    10) No the finger pricks, needles, infusion sites don’t hurt.

    Sorry for venting…. :)

  13. Mat
    Mat February 22, 2009 at 11:16 pm | | Reply

    I agree and feel your pain. It’s nice to hear other people vent about stuff that drives me crazy too.

  14. Dawn
    Dawn February 23, 2009 at 1:59 am | | Reply

    I recently was having lunch with a colleague friend of mine, and told her about my condition. She didn’t miss a beat, and after a short explination on my part, we continued to gossip and discuss what we had been discussing, namely mountaineering. Of course, I was nervous and a tiny bit upset that I had exposed myself, but this angel wasn’t new to suffering, though you wouldn’t know it looking at her, a marathon runner and asthma sufferer who had spent three years of her childhood in hospitals. Now I feel okay and relieved–we’re planning a bike ride (and I didn’t want her to freak out when I had to do a blood-test).

    But I’ve had horribly embarrassing moments with other people, and you can’t imagine how a person will react. More often than not I don’t bother to mention my condition. What I hate is when others insist I eat a piece of cake because either I’m depriving myself of a pleasure in life, or I have an eating disorder, or I’m just playing good-diabetic (because I must obviously sneak and cheat when I’m alone). I just think these folks are plain ignorant, and I more often than not do not feel in the mood to be this illness’s education advocate. Sorry. I’m human.

    You can ‘feel’ when a person is really interested and curious to learn. And you can ‘feel’ when they are not. You don’t have to educate, and why should you?

    There are moments of grace when you know who really respects you, and those moments are a blessing.

  15. Chrissy
    Chrissy February 27, 2009 at 7:55 am | | Reply

    oh I totally agree that it gets annoying, expalining that DM1 isn’t a “Terminal Disease” but you sort of left yourself open there.

    Life Support!??!

    I know what you were going for, but yeah, life support may not have been the best phrase.

  16. Martin
    Martin March 6, 2009 at 8:36 pm | | Reply

    I’m diagnosed of Type 2 at age of 26 and it was devastating to start to lose weight from 220lbs to 150lbs in 3 year range.

    The first reaction that I got from my relatives, friends and ex-girlfriend are “can you get cured?”, “would a surgery fix your problem”, “it sounds like a HIV symptom”, “why are we having souplantation again?”, and on and on …

    And yes AAD has been surrounding me all the time and it is why I don’t longer want to test and injections in public; I was once told to do the blood check somewhere else since other ppl may feel uncomfortable too see blood from a coworker. I think this is a pessimistic act but it make me more pessimistic when i see their “you look ill face”.

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