15 Responses

  1. Laura
    Laura March 24, 2009 at 6:34 am | | Reply

    “We are ill, without being sick; disadvantaged without being disabled; and chronic without being terminal.”

    I think you said perfectly. That is EXACTLY how I feel about my diabetes, and I’ve never heard it expressed that way.

    It feels like a gigantic catch-22, and leads us to things like what you wrote about yesterday: the sick card (we know we can use it, but we don’t need to use it, etc). It’s a limbo state.

  2. tmana
    tmana March 24, 2009 at 7:05 am | | Reply

    That is a perfect description, Amy…

    I am sometimes a bit more cynical, describing successful diabetes management as being akin to HAVING to develop and live with OCD (obsessive-compulsive disorder). In the end, though, we know it’s our lives on the line, and the quality of those lives…

  3. CALpumper
    CALpumper March 24, 2009 at 8:04 am | | Reply

    What a Great post Amy. Thank you.
    You hit it on the nose with so many words and phrases.
    I So get the “best friend doesn’t get it” part. It stings, still, after more than 15 years.

  4. Scott K. Johnson
    Scott K. Johnson March 24, 2009 at 8:51 am | | Reply

    “We are ill, without being sick; disadvantaged without being disabled; and chronic without being terminal.”

    Amy – that is SO well said.

  5. Richard
    Richard March 24, 2009 at 11:38 am | | Reply

    Nice article, I am the admin of the European teen site.
    I think this slogan should provide the main problem. Not the whole complex, but the main problems of teenagers. We have many misunderstandings about typ-1 and typ-2 … but we as the diabetics do the best with this.

    We have founded a non-profit association, to fight for the rights of diabetics here in Germany. One of the Problem is, that the health-insurance will not pay the modern insulins in the future, they are too expensive … and many other problems.

    Richard

    Sorry, my english is not the best.

  6. Lauren
    Lauren March 24, 2009 at 5:23 pm | | Reply

    I never know how to explain it either. One one hand I am a healthy, active twentysomething — and I don’t want to be considered sick. On the other hand, a little upper respiratory infection could land me in the hospital. I suppose it’s like buildling your house on a seaside bluff in California. Most of the time you enjoy nice weather, but when the rains come, it’s only too easy to start sliding down that cliff, and before you know it you’re in the ocean.

    On a daily basis, I find myself withdrawing from the social scene. Drinking alcohol would require WAYYYY too much planning. I should also educate someone around me in case of emergency, but I find that no one wants to receive instructions in glucagon kit use before the party starts. I prefer to eat at home most of the time — I’ll often dodge invitations to join friends or classmates for meals, because for me it’s not just dashing out for a bite. There are too many variables involved.

    Even though I’ve explained everything to the people I know (including my parents) about a thousand times, they are still fuzzy on the details. My future mother-in-law keeps advising me to “take a break from the diabetes.” Her father was a type 2 diabetic in his later years, and he gave himself every Sunday “off” — skipped exercise and ate whatever he wanted. She thinks I should leave my needles at home for a day and just “enjoy life.” Hmm. Let’s see how much I’m enjoying life when I wind up in the ER.

    My former coworkers used to get upset when I wouldn’t snack with them or eat the food they brought in. After I’d politely refuse, I heard comments like, “these are organic oranges, they are healthy” or “these blueberry muffins are made with whole wheat flour, they’re good for you!” After awhile they just rolled their eyes when I demurred, and even asked whether I was “taking this thing too far.” Um, yeah, guess I am!

    Or, another favorite: “Well you were diagnosed with diabetes earlier, right? You seem fine now.” How to tackle that one?

    I have an elephantine memory for the ridiculous things people say to me as I try to explain myself as a type 1 diabetic. I don’t know how to get the point across effectively. Yes, I’m young, healthy and strong, and yes, I have a very serious disease that impacts literally everything in my life. Not easy to explain.

  7. Kendra
    Kendra March 24, 2009 at 8:03 pm | | Reply

    Amy, I read your eloquent summary of life with Type 1* to my husband and he said, “That’s depressing.”

    Yes, but it’s TRUE. IT’S TRUE, IT’S TRUE, AND YOU’LL NEVER GET IT. Man, this crap is frustrating after awhile. Can we all be done with it now?

    *”We are ill, without being sick; disadvantaged without being disabled; and chronic without being terminal.”

  8. trends watch
    trends watch March 24, 2009 at 10:15 pm |

    trend watch : » A Way of Life – DiabetesMine: the all things diabetes blog…

    [...]This week, Mary Tyler Moore unveiled her new book of memoirs, titled “Growing Up Again: Life, Loves, and Oh Yeah, Diabetes.” I can’t wait to rea[...]…

  9. June S.
    June S. March 25, 2009 at 4:01 am | | Reply

    Amy:
    Thank you for a wonderful post! I can really relate to that pearl bag. It’s hard to find an evening bag that will hold all that is necessary for a diabetic to survive a dinner party! (It is also difficult for insulin pumpers with CGMS (like me) to find evening gowns and cocktail dresses that allow us to simultaneously conceal our pumps AND allow us to check our BG’s via the sensor!)

    As for the German teens’ diabetes website, I got worried when I read this: ” here in Germany. One of the Problem is, that the health-insurance will not pay the modern insulins in the future, they are too expensive … ” This has me especially worried, as they obviously have “nationalized” health care over there. Let’s hope the new U.S. administration doesn’t deny us the proper tools to manage our diabetes!

    And let’s hear it for good old Mary Tyler Moore. She was lucky to have married a physician (I read her first autobiography) but NOT so lucky to have suffered both alcoholism and Type I diabetes many years ago. Losing her son was another downer. She is really a survivor, and I can hardly wait to read her newest book!

  10. Richard
    Richard March 25, 2009 at 2:06 pm | | Reply

    @June S.
    The health-insurance system is very complex, we have 240 health-insurances. The system ist good, we should not say all is bad. But in the area of “diabetes” we have many problems. It is not easy to get an Insulinpump or CGMS, but if you have the okay you must pay “only” 100-200 Euros per Year for Insulin, Pumpmaterial and so on.

    I think one health-insurance make it easyer … we have too much bureaucracy.

  11. olga
    olga March 26, 2009 at 9:55 pm | | Reply

    amy, SO TRUE!!! and so very well said i want to cry with relief at the recognition!

    i’ve often wondered: “dang, i’m spontaneous, i love travel and adventure. boy, mongolia would be a fun trip, why haven’t i gone? what sort of spineless boring wimp am i?” and then *wham* … here comes type 1. we always have to plan (what if i lose my insulin on the steppes of ghenghis khan? i’d be completely up a creek. and possibly dead). thanks for pointing that out so well. i now feel less like a sad sack and more like a, well, responsible diabetic (and mom to two little ones).

    *big sigh* and a hoist of ye olde bootstraps. onward!

  12. Norman Savage
    Norman Savage April 1, 2009 at 6:55 am | | Reply

    Hello Amy,

    I’ve lived with diabetes for over fifty years–got it when I was eleven–but it sounds to me like you know what you’re talking about. I’m a writer living in New York City and thought I’d share this with you. It’s about a documentary I saw last night and wrote about this morning. I believe you and the others on this blog will know what I’m writing about.
    “Sick In America”
    After a long day of work, I wanted to chill and fade into the evening. There was a “Frontline” piece of my PBS station, “Sick In America” that I wanted to watch because I am, “sick in America.” I always watch these things at my own risk, much in the same way I watched Moore’s movie, “Sicko.” It angers me, “infuriates” would be a better word, and perhaps that’s a good thing. What is not a good thing is the way that sick people are treated in this country.
    There has been up until this point, no way around “our” status and dilemna: to be sick or have a disease (dis-ease–implying we are not at ease) is to be stigmatized and marginalized by the institutions, particularly the insurance institutions in this country. Now I don’t know about you, but I know that I didn’t one day go window shopping on Fifth Ave and when I saw a store that displayed “Diseases For Sale” go in an inquire about their uniqueness. A salesclerk didn’t come up to me and ask which diabetes was I interested in: Type 1 or 2? “What’s the difference?” I asked. “Well,” he responded, “do you like needles, or do you prefer something oral, a pill perhaps?” “Hmm,” I pondered, “I think I’ll go with the needles; more symbolism, more involved, it would satisfy my curiousity because I’d have to do a bit more, learn a bit more. Yes, Type 1 will do very nicely, thank you very much. Could you wrap that up, please?”
    The fact that this country has been having a conversation about universal healthcare for sixty years now and the insurance business people–even those who have illness’–and nothing has been done except exacerbate the problem and increase those without insurance, is one of the biggest sins against people, maybe next to slavery, that this country continues to produce. People who have pre-existing conditions are screwed, people who think they’re insured later find out that the small print of their policies either exclude their condition or “taketh away” after certain necessary treatments start; their costs force them into bankruptcy and back into the homes of their parents–if they’re lucky enough to have parents and homes–or into the streets… or morgues.
    I was lucky. My father had a business that insured me for a very long time. Had I not had that, and the good fortune to find good doctors, I would have been long gone; now some people might consider that a good thing, but those who do they have some long days and nights ahead of them. I went through, detox’, amputations, a qua-druple by-pass, madhouses, and most recently stents in my legs–all paid for by either private or public insurance. Probably the most beneficial thing about one of my diseases is that I learned how to best navigate myself through the insurance maze. But for others, not so fortunate.
    The reality for diabetics, as well as for millions of others out there, is that we who have a disease will probably experience some complications eventually (as we spend our money to maintain our disease), and those others will, at some time, get sick. Having access to medical care and treatments, and medications and “durable medical supplies” should not be subject to the profit motives of the marketplace, but a right, a moral right as well as an economic necessity, that should be given and enjoyed by the people of the country they live in. Anything less is a sham and a fraud.
    I am diabetic. Each day I know I have a disease that needs to be addressed; I wake up and go to bed with it. The last thing that I need to know is that some people in this society who, for whatever misguided reason, have the power of the purse strings over me, think of me than less than whole or human and make me pay another, perhaps heavier, emotional price on top of the physical one.

    Best,
    Norman Savage

  13. Victoria
    Victoria April 2, 2009 at 12:40 pm | | Reply

    “We wish that people would understand that diabetes is more than an illness. It is a way of life.”
    “We are ill, without being sick; disadvantaged without being disabled; and chronic without being terminal.”

    I love these quotes, they express exactly the way I feel. I am very blessed to have a wonderfully caring family, but even they sometimes “forget” that I am diabetic (except my mother & father). I have had on numerous occasions been asked if I would like juice (or one of those sweet beverages like Nestea, etc..) to drink…by my own cousin. Haha, I mean come on.
    My resent ex-boyfriend told me that he felt that I used my diabetes as an excuse to get out of having a discussion/argument with him. He couldn’t seem to grasp the fact that I don’t have my diabetes under 100% control and lows happen & I cannot just put my being low aside until we are done arguing. I could not believe what I was hearing. I am 21 and have been a diabetic since the age of 3 and never has anyone ever said anything like that to me.
    And don’t even get me started about the whole big bag situation. I caring bigger bags so that I can fit my diabetic supplies & food in it, not so that I can hold on to my “friends” phones, wallets & such when we go out somewhere.
    Oh and the arguments that I have gotten into with security guards at clubs & concerts over my having juice in my bag are just ridiculous.

    Anyway, this has turned into a rant. I am just glad to know that I am not the only one that has to deal with the incompetence of the general population.

  14. Jen
    Jen April 14, 2009 at 2:42 am | | Reply

    I totally relate to the bag thing! I was a bit surprised when a friend from high school gave me two blocks of chocolate for my birthday – what is that all about?! Another time I had a ‘pancreas party’ to celebrate my tenth anniversary of having diabetes, and a couple of people gave me LOLLIES to celebrate….man, I know they have good intentions but people just don’t get it!

    It’s so frustrating, and I’m sick of people telling me to stop drinking diet coke because ‘it’ll give me cancer’ – well, thanks, actually you have no idea what you’re talking about and how about you find me something other than water that I can drink that has no carbo? Again, people have good intentions but I get offended pretty quickly.

    Patience, I think, is the key, and trying to involve people with your diabetes. But it can be hard.

  15. Holy Hump Day, Batman! | Lemonade Life

    [...] Tyler Moore recently launched a new book about living with diabetes. You may have read something about it. If you’re in the NYC area (like me!), you have the opportunity to check MTM out at a couple [...]

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