Yes, But You’re Wrong

Kathryn (my wife) recently had a conversation with someone during which she (Kathryn) spent much of her time dispelling her friend’s confusion about what my life is like. For example, this person knew I wore an insulin pump, but thought it was surgically implanted in my body, that it was a “set it and forget it” type device. (Oh how I wish.) Kathryn also disabused her of the notion that I must adhere to a strict, boring diet. This woman was told that with good self-management, I’ll live the same long life as people without diabetes — I’m not going to die young; I’m not destined to lose a foot or get neuropathy or have heart problems.

These days I rarely encounter new people with whom I end up talking about diabetes. By new people, I mean folks who don’t know much about the illness but who express a sincere interest to learn more. (You’ll be happy to know I’m not that guy, the one who backs you into a corner and then gets on my soapbox to talk about diabetes every time I have a conversation with someone new!)

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It’s inevitable, of course, that the novelty of diabetes-as-conversation-topic would wear off. My diagnosis was almost five years ago. It was a hot topic for both Kathryn and me for a good six months. It’s barely on our radar of “things to talk about” these days.

I kind of miss conversations with the truly curious. It always felt good to shed light on misguided apprehensions. That word diabetes: you won’t find anyone who hasn’t heard it who thinks they know what is, except what I find is that almost all the people who think they know what it is don’t.

Apart from this blog, though, these days I live quietly with my illness. Apart from drafting this blog entry, I don’t give much thought to what people — new people: friends and colleagues when they see me breaking out the insulin pump or test kit for the first time — think about me, my illness. If it’s misguided, so be it. I move on.

And I’m glad I don’t fret over and try to cure the world of its erroneous conceptions about diabetes. I don’t have enough mental energy to give over to such a task. Some of you may, and more power to you. Despite their best intentions, though, most people are misinformed about what diabetes is, what causes it, what it’s like to live with it, and what the prognosis is.

Media won’t fix this. I won’t fix this.

In addition to Kathryn’s conversation with her friend, the past week I’ve been reminded a couple of other times that I’m thought of differently because of my diabetes. I get this twinge of a feeling that some people who don’t understand what diabetes is might have this — hmm, I don’t really know how to put this — bit o’ pity, or sadness, or some other woe-is-Eric thing floating around in their minds that I’m destined for one bad medical development after another, a life fraught with misery because he has diabetes.

Of course, because I’m unable to get into others’ heads, and because I don’t live in a world filled with gossip, the degree to which people may feel sorry for me eludes me. And quite honestly, most people probably give only a fleeting moment, if any, to think about me and my illness.

Yet for me, in those fleeting moments when I’m self-involved enough to worry about how others think about me, it bothers me. I wish I had a little pamphlet I could hand folks. In it would be the truth about diabetes. And this little pamphlet? They’d actually read it!

By the way, I’m going to order this mug from the Behavorial Diabetes Institute. I’m going to use it at work. I ought to get it printed on a T-shirt, but I won’t.

  • jim snell

    Eric:

    Most profound. You are right about the misconceptions out there and “Media won’t fix it”
    and “I won’t fix it.”

    Somehow this nasty set of diseases seems to facilitate a wealth of mis-understanding, poor scientific comment or very deep and complex and the wealth of fo-gooders all attempting to help.

    Why there is such a disperity between the scientific papers logged with all the lobbyists groups and the difference from their officially supportted positions and what the medical group officially drives is really startling. The press makes this far worse looking for a story and silver bullits – that kill the vampires instantly and quickly.

    Your statements says it all. Have a great day.

  • Matt Bansberg

    Diabetes is a fatal condition. I am amazed how strong you are. You really have the will to stay healthy despite of your condition. It’s great that you accepted your condition and you are willing to fight for it. There are some who easily get depressed and tend to give up because of Diabetes. The good thing about having this condition is that, you can still live normally as long as you adhere to proper medication, healthy diet, and exercise. Continue encouraging more people through your blog posts that fighting any health condition is possible.

  • Jan Chait

    Life is a fatal condition. At least, I’ve never known anybody who got out of life alive. Everybody, with or without diabetes, should strive to live a healthy life, adhering to a healthful diet and exercise and medications when necessary. Although the fact that we do get monitored a lot more tends to drive it home.

  • Joe

    I don’t believe it’s any harder for a person with diabetes to stay healthy than it is for a person without it. It’s not (to me at least) a monumental struggle against a terminal disease. It’s simply a discipline… mostly a process of establishing healthy habits and eliminating non-healthy ones. People with diabetes who follow their treatment regimen and avoid behaviors that cause heart disease can and do live “normal” lifespans and beyond. “Fatal condition” is one of the diabetes myths that seems to persist no matter what information to the contrary exists. I certainly don’t put myself in the same category as people with terminal cancer.

  • jim snell

    Unfortunately; if only life was so simple. Look dude;

    As long as there are no medical conditions causing excess glucose in blood system; what you say seems valid and applies when one has pre diabetes. As the conditions such as liver leak get worse and the liver throws back more and more glucose at problem, you are mistaken to think your “good habits” and discipline will save you.

    In fact, the liver nonsense can completely overwhelm any ” good practices or discipline ”
    which in my; a case drug boost of metformin to shut off liver leakage was absolutely necessary; now that is being done; the rest of your argument/suggestion is valid and in fact necessary to maintain good a1c/low daily BG.

    After 30 years, I am fed up with the pius mis- leading crap that wasted 30 years of my life on useless drugs and now after stroke and working intently the last 4 years and recorded data clearly show something else. The failure to properly assess, diagnose and correct serious liver leakage is criminal and not necessary.

    I have extensive fingerstick data on daily basis and now CGMS reflecting the validity of my comments.

  • B!K

    Diabetes is a manageable disease. Almost always lifelong, but certainly not generally fatal!

  • jim snell

    wrong:

    It is and can be fatal. Failure to get the BG down will rot the whole body out.

    I would not peddle that impression it is not fatal. Not to be rude, it sure as hell is and can sneak right up on one.

    As one who got to close to pine box and suffering stroke, I completely and earnestly disagree. I have had to stabalize my kidneys, stop eye hemorages, improve lung performance, drop body swelling from excess glucose and water absorbption as well correct issue after a stroke.

    The reason the numbers and disease is exploding out with what say is 200 to 300 per cent inreases suggests that a sanguine attitue Diabetes is no sweat and fully manageable is a key factor in not solving this mess early with correct and helpful data and direction and just throw pills at it.

    The amount of body destruction, fingers, toes, eyes and kidney destruction say something alse entirely.

    The ole its your own dumb dam fault is unhelpful no matter how sugar coated that is masked with sophistry, sometimes wrong – uncaught and sometimes uncorrectable medical issues is at the root of the problem – not personal choices and is not helping anybody and I am fed up listening to that crap.

  • theresa

    with all the reading and personal experiments I’ve done on myself, I beleive this is not a true disease, it is a genetic problem that doesn’t work in our day and age. We have too much food always available. Look at the amounts of food served in restaurants and look at the store shelves. We are no-where near a famine state that would make diabetes work in our favor. Diabetes can be managed quite well, given the disipline and personal investment, and most importantly and “good” relastionship with your Doctor. Not everyone does and some never question their Doctor. I think you should question and then get your doctor involved, or find a new one if you can. I also know that diabetes isn’t restricted the a fat person, it happens to the skinny ones too, again I beleive its about genetics and how the body reacts to what you feed it. We are all our own experiments. find what works for you and stick with it.

    theresa

  • jim snell

    theresa:

    dead on – keep on truckin.

  • misskitty3

    I am a LADA diabetic. LADA is “Latent Autoimmune Diabetes Diabetes in Adults”
    I also lived in an emergency women’s shelter. 1 of the residents, a Persian woman,nominated herself my food police. After a week, tired, stressed & frustrated, I yelled “ShutUp!”. I told her that she may know a lot about Type 2 diabetes; you know nothing about insulin dependent diabetes.” I told her that after 8 years with this disease, I know what I can & cannot have.It is also w/in the human nature to go inthe opposite direction when told “No!””You are not my food Police. I am” After confronting her, she backed down.
    Yes, there is still tons of old mis-information out there. Slowly it is changing with us practicing PWD;s out there.
    THANKS TO ALLL THOSE WOULD READ & COMMENT ON THIS BLOG. HUGS & KISSES TO YOU ALL!