You Don’t Know Jack

[WARNING: Uncheerful post... sometimes we just need to vent]

My husband has this infuriating way of attempting to calm me down when I get worked up about stuff: he likes to say, “It’s really not a big deal.”

I know he means well, but oooh, I could just slap him upside the head when he says that. How the heck do you know what’s a big deal, Sgeeter? (that’s my private little smack-talk term for non-diabetic, sugar-eaters — when I’m in that kind of mood).

When I’m trembling and can’t find my meter and can’t think to reach for anything else… when I’ve dosed 3 times in three hours and I’m STILL coming up over 240… when the mail order pharmacy has lost my prescription AGAIN and I’m on my last vial of test strips… when I just know it CAN’T be time to go the lab for blood work again already, but it is… when everyone around me is gorging on fruit salad and birthday cake, and I know I just CAN’T… when I’m traveling and suddenly have a panic attack that I’ve forgotten my insulin or pump supplies… it IS a BIG DEAL.

Dont_tell_me_2The way I like to put it is that living with diabetes is like childbirth: you really have to experience it yourself to “get it.”

Last week I received an email from a guy named Dave. He knows Jack, if you know what I mean:

I have been a type I diabetic for 12yrs now and I find it very hard to stay on track. I am now 35. Nobody understands, not family or work. As it turns out I ended up being a stay-at-home dad as my job options have been limited. I missed out on a bunch of opportunities because of diabetes such as Helicopter pilot and FBI Special Agent. Both jobs I was accepted to but was eventually turned away after the physicals discovered my diabetes. Heck, I can’t even keep a job doing computer work as I get in trouble for my eating habits and bathroom breaks. Lots of lawsuits I could muster up, let me tell you…

In my case, this crazy disease has somehow BECOME my job, so nobody’s gonna tell me what I can or can’t do. So I guess I’m lucky that way. But I’m not always liking it. I mean, there are times when we can all focus on the gifts that diabetes has brought us. But on a day-to-day basis, it can just be so G-D frustrating. Lots of days it really does feel like a big deal. (Admittedly, my mom likes to remind me that I come from a long line of high-strung women; not an asset). Still, on those lots of days, I just don’t want nobody tellin’ me what I should or shouldn’t get worked up about. Know what I mean?

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30 Responses

  1. Albert
    Albert October 3, 2007 at 8:12 am | | Reply

    You’re right Amy.

    We “non-diabetic, sugar-eaters” will never fully comprehend the gravity of the 24/7 job that diabetes is. Living withOUT diabetes deprives us from the right to tell you what you “should or shouldn’t get worked up about.”

    I am not saying that his statement wasn’t inappropriate or just bad luck and timing, but I’m sure he’s just as frustrated over not being able to provide the help that a bolus could.

  2. Laura
    Laura October 3, 2007 at 8:15 am | | Reply

    Know what you mean?! HECK YEA I KNOW WHAT YOU MEAN! I’ve been diabetic for about 7 years now, diagnosed at 32. Lugging around my meter, my insulin, my “emergency” soda pop in my purse and always wondering if my numbers are in range can really be frustrating at times. I’m going to a meeting with my daughter this evening and they are serving pizza and pop…don’t think I’ll be having any as I don’t feel like trying to dose for pizza at the meeting and then worrying if I’m going too low afterwards. Ugh. But, we keep on keepin’ on and somehow we manage to have the good days too. One life and our just happens to be with diabetes….so we have to try our hardest to make the best of it!

  3. CrazyACpumper
    CrazyACpumper October 3, 2007 at 8:38 am | | Reply

    Type 1 Diabetic for 22 years. I know what you mean!!! “They” just do not understand. That is why your blog and those who comment are so important to me. I do not feel alone.

    Although most of the time I do. This morning I woke up low. Trying to eat something and figure out why was exhausting. On top of that I think I ate something bad and well that added to the mix…..

    The things we HAVE to think of during the day is what gets us down. It is what makes us so frustrated with “them”. They do, we cannot.

    Hang in there all! And venting is SO important Amy!!

  4. Jenni
    Jenni October 3, 2007 at 8:42 am | | Reply

    Amy

    Don’t want to be disrespectful for Type 2 but they are in a different catagory than Type 1 and have no idea what our days are like. I work with one who eats whatever he wants his Blood Sugars are in the 80s and 90s most days. I count everything that goes in my mouth and only have a good day about once a month. I have been classified as a brittle diabetic; even when they hospitalize and think they can control the numbers its not possible. But the people who really iritate me are the Type 1 who never have any problems with their Blood Sugars or their diabetes. I havn’t met any but you hear from them on the different forums.

  5. Michele
    Michele October 3, 2007 at 8:55 am | | Reply

    Hi Amy -

    This is the first time I am posting a comment but I read your blog every day. You and I must have been on the same page yesterday as I tried to explain to a friend about what living with Type 1 is like.

    It’s the first thing you think about in the morning, and before you get behind the wheel, and when you are leaving the house or office, and when the insurance company declines reimbursement again, and in the middle of a meeting when you start feeling tired and crappy for no reason…and a hundred times more every day.

    And her question back to me, which almost brought me to tears was “But when do you get to a routine where you don’t have to do that anymore?”. Sigh, they just don’t get it.

    From those of us on the inside with you, go ahead and get worked up about any damn thing you want – we understand, we’ve been there and are there every day. We appreciate your candor – as it is very validating to know it’s not just us. So – thank you.

  6. Scott K. Johnson
    Scott K. Johnson October 3, 2007 at 9:03 am | | Reply

    Yep – it is a big deal.

    The things we are all simply EXPECTED to do each and every day (for the rest of out lives) are pretty unreasonable.

    We are all immensly incredible people for being able to do what we do and tackle other stuff in life (families, jobs, blogs, etc.).

    I am very proud of all of us, and have a great deal of pride when I see D folk doing amazing things (like writing this kick ass blog Amy!).

    I also share the surges of frustration and anger with how things are.

  7. anonlurkermom
    anonlurkermom October 3, 2007 at 9:12 am | | Reply

    what i didn’t get before my daughter’s dx was how relentlessly unpredictible it all is! i really thought what michelle’s friend thought: that you’d get to a routine. now, we are in the stage where everything is explained by “it’s the puberty”. it will be a long three years! hang in there!

  8. Karen Spangler
    Karen Spangler October 3, 2007 at 9:14 am | | Reply

    Hey Amy…I hear you LOUD and CLEAR! You know..with the exception of my husband…NO BODY in my family cares what I go through daily. In fact, they never ask (which is probably a good thing). They don’t know what an A1C is…they realize I just started pumping but have no idea how much that has changed my life. They really just don’t get it and frankly they never will…
    unless they get the disease which I would not wish on anyone…well except for those who say I can’t eat this and that. I hope they get it but that’s the devil in me talking.
    Hang in there Amy and remember…WE get it! We feel your pain and know those moments which are:

    “I’m almost out of strips”

    “BG reading 298…WHAT? 298? Re-test BG 308? HOW? HOW??” (Notice the bald spot on the side of my head?)

    “Where is my insulin” moments.

    My personal favorite BG read 48…Where’s the sugar?!! Hec. Where’s the fridge? :-)

  9. Chrissie in Belgium
    Chrissie in Belgium October 3, 2007 at 9:42 am | | Reply

    Yeah, I definitely know what you mean! My dear husband WILL NOT talk to me when HE thinks I am having a hypo. Number one, sometimes I am NOT having a hypo! I KNOW that our spouses have to put up with ALOT, but they just do not GET it, not really! Thank God we can explode on blogs!

  10. Justin
    Justin October 3, 2007 at 9:44 am | | Reply

    Like some of the other commenters here, my frustration is also with other diabetics, Type 1 and Type 2, who seem to doing just fine. It’s jealousy, of course, because I have been Type 1 for 10 years and have pretty much never been able to get a handle on it. I actually used to read a whole series of other diabetic blogs, but I have dropped them because they do nothing for me except make me feel worse about my situation. Your blog, Amy, is still on the list. Posts like these and the comments that people leave are some of the best “group therapy” I have had. It is so refreshing to know that I am not the only one who feels like I do. Sounds cliche, but it’s true.

  11. Chrissie in Belgium
    Chrissie in Belgium October 3, 2007 at 9:47 am | | Reply

    Oh, and I forgot to say my kids NEVER take the slightest interest at all in my diabetes. For something that SO affects every minute of every day, what do they know about me? NOTHING! And this is family!

  12. Jayne
    Jayne October 3, 2007 at 9:59 am | | Reply

    Oh yes…and…I have a vague memory of someone mentioning this idea in the past: Couldn’t we all go to some great location on the globe and all scream at once? I’m ready. (-:

  13. Bernard Farrell
    Bernard Farrell October 3, 2007 at 10:21 am | | Reply

    I know EXACTLY what you mean.

    It is stinking awful to have diabetes.

    But I prefer it to many, many things I might have. If I focus on the downside it’s really bad, so I try to ignore it for the most part.

    I just had this random thought. What if we introduced ourselves to our legislators and volunteered to be their diabetic conscience for a day. We’d follow them around and everytime they do ANYTHING that we (as diabetics) would have to care about we’d let them know. “No senator, you have to bolus before you eat that doughnut” “Congressman you know you can’t have that drink with insulin on board”, and so on. Maybe we’d get more funding that way. At the least it’d be fun.

  14. rebecca
    rebecca October 3, 2007 at 11:36 am | | Reply

    Amy,

    First, I’d like to thank you so much for linking my article on diabetes to your blog. What an unexpected and wonderful surprise.

    Second, I do know exactly how you feel when loved ones try to calm you down when you are in the middle of shaking and not feeling particularly well. I chalk it off to the fact that they do not really understand as they have no point of reference.

    I am not diabetic but have reactive hypoglycemia and have been diagnosed as pre-diabetic. Although my problem is low blood sugar, the symptoms are the same as a person with diabetes: excessive trembling, confusion, lethargy… The diet that I have to maintain is also the same. So, although I do not know about the life of living with insulin injections or pumps, I do know very well the byproduct of living with a disease that affects the pancreas and how that completely changes and controls your life. Gone are the days of eating when you want to, eating what you want, being careless of overexercising, etc. It’s a point of no return and the only thing left for you to do is to learn to play by its rules.

    Love,
    Rebecca

  15. M
    M October 3, 2007 at 1:06 pm | | Reply

    Yep – Know what you mean.

    *sigh*

  16. Linda B.
    Linda B. October 3, 2007 at 1:46 pm | | Reply

    Hi Amy
    I’ve been diagnosed since age 9 and am now 38. Since the beginning of all of this I was considered brittle. I have never had great numbers…ever. I have lost jobs do to this disease, have been told to do something to make it better.. and my all time favorite is, don’t eat that you’ll get diabetes!!! Umm..you think??
    i watch everything I eat, measure, how will this affect me? My gastroparesis is extremly bad today, how long will it take to go through my system. Is that a floater in my left eye again,crap!!
    my boyfriend a type 2, now knows when I am having a low, usually before I do, he says he can just tell. But still, he doesn’t get it.he still eats whatever he wants and still does not test, and manages to come in ata 6.5, my last A1C…9.3, son of a b***h, it really pisses me off. I know people try to understand, but they can’t. Even our doctor doesn’t have a clue. Let him have to live with the decision I have to make between buying medicine or food, or keeping the electric on. Now I have no insurance and am having panic attacks about how to pay for this and that. Our meds our not an antibiotic you take for 10 days and then your done. You need these test strips, insulin and all the other crap you have to carry around everyday. The best way I have gotten my point across is to tell people, I take the insulin to stay alive, to stop is to die..do you understand that??? Seems to work for me.

  17. Jonathan
    Jonathan October 3, 2007 at 1:56 pm | | Reply

    It is so reassuring to read about the frustrations other type 1s have with life in general. My marriage has just ended after 15 years (all of them diabetic) because my wife would not accept the day-to-day hardships of living with a diabetic, and the fact that no one can be perfect with it. We can do everything diligently, and still get low. Yes, it is a burden on our loved ones, but it is also a huge burden on us to watch everyone around us have that bowl of ice cream or handful of Halloween candy. Only other type 1s can truly know what it is like to wake up disoriented in the middle of the night with BG of 48, and the other wonderful things we have to deal with every single day of our lives.

  18. Sharon
    Sharon October 3, 2007 at 2:23 pm | | Reply

    Hi,
    Husband has been Type 1 since he was three, now 47. Married for 22 years, and I will never fully know the frustration, anger, diligence, and overwhelming choke hold that diabetes has on him. But everyday I try, and everyday I marvel at what he does to make sure he is healthy and here for me and our kids. Aside from the obvious of making sure he always has his diabetic supplies, it’s all I can do.

  19. aaron
    aaron October 3, 2007 at 2:47 pm | | Reply

    Just soften. Cry in front of your loved ones and you will see how not separate they really are. You will see how their hearts are open to your suffering in the same way your heart is open to theirs. Compassion for yourself is love. Feeling sorry for yourself and resenting others is separation. Which one will bring you happiness? How do you respond to high blood sugars? Is it the most helpful response?

    Kind Regards,
    Aaron (type 1 for 23 years)

  20. Jana
    Jana October 3, 2007 at 3:29 pm | | Reply

    “I just had this random thought. What if we introduced ourselves to our legislators and volunteered to be their diabetic conscience for a day. We’d follow them around and everytime they do ANYTHING that we (as diabetics) would have to care about we’d let them know. “No senator, you have to bolus before you eat that doughnut” “Congressman you know you can’t have that drink with insulin on board”, and so on. Maybe we’d get more funding that way. At the least it’d be fun.”

    OOOH. This is SUCH a good idea, especially if we get to shadow legislators we don’t like…(I have someone *particular* from my state in mind…)

    In a really awesome world, we could get Medtronic or one of the other pump companies to fit out the legislators with saline pumps for the day…then we could actually make them take “boluses” and such.

  21. Eric
    Eric October 3, 2007 at 6:23 pm | | Reply

    Well put ‘Aaron (type 1 for 23 years)’. Seems to me it is not reasonable for anyone to expect to know what it’s really like to walk in their shoes. It’s very difficult to be sensitive to what others are going through; the well meaning intent to help is often mis-understood. The attempt at empathy often comes across as minimizing. But perhaps with your perspective you will be luckier in connecting to others w/ (non-diabetes) health or other problems. Ideally we should all strive to see the human condition for what it is – imperfect and emotional, but often sincere and caring.

  22. Amylia
    Amylia October 3, 2007 at 11:17 pm | | Reply

    I like Jana’s idea.

    I like this post.

    I like that you’re out there, and everyone commenting is out there, and we have a voice and place and a way to say what we want where everyone understands.

    I’m glad we are with people who “Get it” and I’m glad not everyone in my life does “get it” or I’d go mad! Balance. Balance is good.

  23. AmyT
    AmyT October 4, 2007 at 4:44 am | | Reply

    I like Bernard’s idea, too. Wouldn’t the legislators be surprised when we kept saying, “STOP! Did you test?” and “WAIT! How many carbs in that? You have to dose now, you know?!”

  24. Jules
    Jules October 4, 2007 at 6:47 am | | Reply

    I agree with every comment concerning how bad diabetes is. But…there are far worse chronic conditions that people deal with every day. For me, my moderate to profound hearing loss has a far bigger impact on my life than my Type 1 diabetes. Hearing is what makes us human. The ability to communicate is the foundation of our human existance. When a person loses that ability it is devastating. Hearing instruments are a help and are on par with glucose test strips which help but don’t come close to solving the problem. I guess I’m trying to relay that yes, diabetes is a bummer, but it is possible to live a good and normal life with this condition. There are and will be far worse things that can happen to you.

  25. Jules
    Jules October 4, 2007 at 6:58 am | | Reply

    I’ve got another thought in addition to my above comment. One of the things that you are told when you have a hearing loss is “don’t expect people to remember thay you have a hearing loss.” You may be the only person that has diabetes in your friend/family/co-workers world. Their daily contact is with people who don’t have the condition. You can’t expect them to always aknowledge and have sympathy for your plight. You’re a lone ranger out there and the sooner you accept it the better off you’ll be. Your expectations are too high and you’ll always be disappointed. A lot of valuable time is wasted agnonizing over whether or not other people understand what you are going through. When it comes to chronic conditions, the only true companion you have is yourself.

  26. Abby
    Abby October 4, 2007 at 7:45 am | | Reply

    I was diagnosed with Type 1 in 1999 at age 17. The messages I got (or at least the ones I heard) at the time all amounted to, “this doesn’t have to be a big deal” (this doesn’t have to change who you are/your life, there’s such great technology now it’s really easy to manage, you just have to be a little extra careful when you’re eating but you can do that no big deal, right?, etc etc).

    I spent the last 8 years trying to swim in that ‘it’s no big deal’ river denial – it was generally fancy free and fun when the denial was successful but terribly frustrating and painful when I just kept washing me up on the shores of frustration with A1cs well above 8. Just recently I finally started to acknowledge it IS a big deal. Diabetes is a HUGE deal. Being honest with myself about how comprehensively this disease impacts my life has allowed me to stop swimming, dry off, and start walking down the path of good control. It is (and likely will continue to be) the hardest thing I have had to do. But I fully believe that the rewards will be more than worth it. But still I constantly have to find ways to keep positive and to remind myself that the whole Big Deal is worth it.

    So far I’ve just been able to explain to myself how it’s a big deal, I don’t even know where to begin with sgeeters. . . .

  27. Dan Fahey
    Dan Fahey October 5, 2007 at 7:06 am | | Reply

    I do have sympathy for your frustration, though I urge you to sit back sometimes and reflect on the kinds of diseases you don’t have and really fear.
    BUT, I don’t feel that way re this Dave fellow you mention. He is using his diabetes as th reason he doesn’t succeed, and that’s self defeating. He’ll never succeed with his attitude. So diabetes kept his from being a fighter pilot, so doesn’t less-than perfect eyesight. That man is hiding behind his malady instead of livingh is life as best he can.

  28. Laura Gulley
    Laura Gulley October 5, 2007 at 8:52 am | | Reply

    I’ve had Type 1 28 years, and spent 20 years working full-time as a classical musician and I’m hoping to keep it up a little longer. I do tend to let everyone around me except my partner and immediate family believe that “diabetes is no big deal as long as I take care of myself.” My colleagues know I have diabetes, but they don’t know what that really means. That makes my life pretty hard but it’s a deliberate choice and it’s to my advantage.

    The payoff: Not knowing about my fairly brittle diabetes and my daily ups and downs, and not recognizing my periods of fatigue or the white face and halting speech of a low, “they” think I’m consistently well enough to work! Ha! They let me have a driver’s license, hire me to play in their orchestra, teach their children, lead their concerts, run their projects…

    and then I earn enough money to buy good food, and I get health insurance so I can wear this pump and get enough strips and take care of myself,

    so they don’t have to see the effects of my diabetes.

    The “understanding” we wish for might be a mixed blessing. Although keeping a hidden disability like diabetes hidden creates some emotional stress for each of us, it also gives us some privilege and leaves us a strategy for survival in these crazy, economically hostile times.

  29. Karen
    Karen October 5, 2007 at 5:34 pm | | Reply

    Type 1 for 41 years and pretty much alone with my disease the whole time. I have worked full time since college and I hardly ever call in sick. I also have not shared with everyone my disease and they so don’t know what I deal with. Over the years of having this disease and trying to obtain tighter control has come the baggage of the 24/7 of it. Tighter control= mind control. I have never used my diabetes as an excuse until recently on my little sister when she was complaining every day about her current pregnancy and how she felt like crap every day and sometimes light headed. I finally had enough and told her that is how I feel everyday with diabetes, well it worked a little. No one knows how we feel day in and day out with fluctuating bgs, but for some reason seeing me have a low when I went to the zoo with my sweet niece and then having a stressful day with my mom recently in the hospital, my sister finally asked how were my bgs and I think she meant it and actually understood a tiny bit.

  30. Health Support Systems
    Health Support Systems October 18, 2007 at 1:23 am | | Reply

    We have launched an application http://www.healthsupportsystems.com/ that helps people who are living with Diabetes manage their condition through self-monitoring and qualitative analysis. The service is free for individual use.

    We’d appreciate comments & feedbacks from users of this forum!

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