24 Responses

  1. Pat Schmehl
    Pat Schmehl July 13, 2012 at 5:14 am | | Reply

    I think this reaction is very common & comes with the territory. We can’t beat ourselves up over these feelings. I am type 2 & have these moments often. I was just on vacation & had difficulty dealing with & making food choices when eating out with a group. I almost had a public meltdown! My diabetes is also paired with both shellfish & nut allergies. When I get like that I try to take a deep breath, focus on what I can eat & use all tools available ; pre planning as much as possible. Do not go anywhere without an app or book listing carbs & other necessary information. Also, all eating establishments are supposed to keep this information on site for anyone who requests it. I have found that this is not always the case however.
    Lastly, take time to educate others. Many times lately when I requested the carb count of foods the person didn’t really understand what I was asking!
    Hang in there and don’t let the bad times ruin your quality of life.

    1. alex Andria
      alex Andria July 16, 2012 at 10:06 am | | Reply

      I read your story and it was a great one that got me thinking about my own feelings. To be honest I have been living with this disease for a while now but I act as if I’m not. I’m not taking care of myself and I don’t know how. I joined diabetic connection so that I can learn to take care of myself and learn not to be afraid. I want to become empowered and live the best life I can for as long as I can. Thank you for sharing your story it has inspired me to do better by my health.

  2. Scott E
    Scott E July 13, 2012 at 5:44 am | | Reply

    Wow, Amy! This is one of the most emotional posts I can remember reading from you on the ‘mine! Very authentic!

    I had one of those “Oh, I’m so sorry” moments, though not in person. I had posted something diabetes related on my Facebook wall (searching… found it!) – it was a link to Ginger Vieira’s excellent VLog #5 “When they find a cure”. I got a reply from a friend (who I didn’t know all that well, I knew her through my wife) who wrote the following (edited to just highlight certain parts of the reply): “I had no idea … I’m so sorry…you always looked happy and healthy to me…never would have guessed you were dealing with all these cumbersome thoughts…I’m praying for a cure”.

    My goodness! After reading that reply you would’ve thought that I was on my death-bed! If it was meant to make me feel better, it didn’t. But I knew her sentiment was well-intentioned, so I didn’t take it too personally. Still, it’s really hard to know how to answer that.

  3. val
    val July 13, 2012 at 6:40 am | | Reply

    I can certainly understand the mixed emotions too! During a recent meltdown, where I yelled something like “I’m tired of testing, tired of having to think about everything I eat, and tired of making this look easy!” my husband told me that it didn’t look easy to him, that he still couldn’t stay in the room while I change my infusion set. He said “I still don’t know how you get out of bed in the morning when the first thing you have to do is put a new site in.”

    I had thought he was always moving about because it was all part of the morning routine to him. So, I felt sort-of happy that he still noticed, that it still bugged him (we’ve been married 24 years and I’ve been T1 the last 9). On the other hand, I was sort-of pissed off – I mean, I have to deal with doing this, and you can’t even deal with watching?

    Mixed emotions. Yeah.

    1. Tim
      Tim July 13, 2012 at 9:30 pm | | Reply

      I imagine it’s hard for him to watch because he cares for you and he can’t stand seeing someone he loves in pain or having to deal with this disease. It’s hard for men to articulate that thought because it strikes at something men want to do: protect their loved ones.

  4. Kathy
    Kathy July 13, 2012 at 6:54 am | | Reply

    Diabetes is a deadly serious disease. There is no gilding the lily. Maybe it’s karma telling us to remember that. And remember that for most of the PWD population, the #DOC is a private club.

  5. Dan
    Dan July 13, 2012 at 6:57 am | | Reply

    Hi Amy,
    You are performing a great function for diabetes and diabetic patients…accross the world. The article is right on. Women are blessed with an emotional intelligence which is a territory that most men are deficient. Men can be so analytical. We all have our challenges and the info you and your team supply is important to all of us. There are many factors to diabetes which crossover into other areas of life. The glass is still half-full and remember to keep on going and sharing the info. From our personal point of view, the people who seem to be happy are the people that we know the least. It is just life. As always have a great day.
    Dan.

  6. Kirby
    Kirby July 13, 2012 at 7:14 am | | Reply

    I feel exactly the same way!! Every day!! Diabetes and Celiac Disease can sure suck the fun right out of any given moment. It does suck!! I’m so ready to give them both up!! Wish I didn’t have to think about them all day every freaking day!! A one-day vacay would be so nice after 40 years of this. Hateful diseases. So thankful at the same time, though, that it’s not something worse!!!!

  7. susan f
    susan f July 13, 2012 at 7:35 am | | Reply

    Great post.

    Part of my personality is to fight; to show others I can do anything they can. But it’s a drain, it’s taxing to be a good diabetic. And no, no one but us can really GET it.

    Last week I learned that a young friend with D, six years after a transplant and thus normal blood sugars, lost her vision to the D. WTF! As hard as we try, it’s hard to acknowledge that we might still end up with complications.

    Thanks for sharing.

  8. Leighann of D-Mom Blog
    Leighann of D-Mom Blog July 13, 2012 at 7:43 am | | Reply

    Thank you so much for sharing these emotions, Amy. It reinforces to me that if it’s difficult for an adult to grapple with these emotions, then I should certainly let my young child feel these emotions and work through them, too.

    It reminded me of an encounter we had shortly after my daughter’s diagnosis. Someone felt sorry for her and it really pissed me off! Now four years into it, I realize that maybe people just don’t know what to say, especially from a very upbeat child, and “sorry” is the first word that comes out of their mouth. But I still hate it when that’s what they say.

    Here’s what I wrote about it: http://www.d-mom.com/i-already-know-you-dont-have-to-tell-me/

  9. Tim
    Tim July 13, 2012 at 7:44 am | | Reply

    I’ve only been a diabetic a few years (3), but one thing that continually surprises me is just how much of an emotional toll it takes on me. What’s confounding is I KNOW this to be true but I really haven’t found any way to deal with it long-term yet.

    The reason for this (at least for me) is that I’m trying to apply a long-term plan to a disease that has here and now demands that take up almost all of my energy. I think what would be helpful to me is perspective from the older generation of T1s. People in their 70s and 80s who have grappled with it a LOOONG time and have been able to deal with ALL aspects of it.

    I remember running into this type of can-do attitude just after 9-11. We were all feeling down and a man who had helped fight and win WWII had just the right words to say: “We got ‘em in WWII and we’ll get this guy, too.” His quiet confidence inspired us to remember that this man KNEW how bad things looked and were, yet, from experience, knew that we’d see it through.

    I need more of THAT in my life.

  10. Lisa
    Lisa July 13, 2012 at 7:56 am | | Reply

    Thank you for this post! It is so nice to know I am not alone in my diabetes battle. Funny when I tell people I have diabetes, they assume it is type 2 (even though I have an ideal BMI and have never been over weight). Some try and offer up “don’t be so hard on yourself” or “eat what you want and live a little”, assuming this will just go away. They act like I am just a crazy health nut. I guess I am a crazy health nut!! I have to consider everything I put in my mouth so I can dose properly. If I don’t do it right there are consequences to pay and the number roller coaster is on! Most people do not understand what we PWDs go though in a day.

    Like you, I am hard enough on myself, but try hard to just be “normal”. My kids see me checking sugars and dosing regularly. A few times they have commented on ” what a bummer you have to take those shots”. The most important thing is they see me taking care of myself.

    I don’t want pity either. I want people to know it is a hard life, but I try and make it as healthy and happy as I can.

  11. Nice Diabetes
    Nice Diabetes July 13, 2012 at 4:21 pm | | Reply

    I say thank goodness for communities like these. Here are one of the few places where such a range of emotions make sense.
    I have those same feelings and sometimes I wonder if its actually the brain is the part of the body that suffers the most with diabetes.

  12. pwd doc
    pwd doc July 13, 2012 at 4:58 pm | | Reply

    What irritates one PWD will make another PWD feel better. Why shouldn’t people feel sorry for us? Would any normal person WANT to have diabetes?

    Perhaps you should plan ahead answers to comments that irritate you. If someone says they are sorry to hear about your DM, perhaps you could turn it around, thank the person for their concern, and tell them how you prefer to focus on how if you work hard, you can still have a fulfilling, happy, and healthy life (or any other comment that you like better – this comment might irritate you also).

    Maybe you could ask your husband what bothers him most about watching you put in your devices – does he have an aversion to watching anyone getting any shot or blood test that involves needles (whether or not it is diabetes related or you) or does he get upset being reminded what your are going through and worrying about you and feeling sorry for you that you have to go through all this?

    I often suggest to kids who don’t like when people ask them if they are supposed to eat what they are eating, to consider politely saying “thank you, but I already have one mother” (humor often lightens an uncomfortable situation)

    I suggest you try in advance to think of your own appropriate responses to comments or questions that upset you and to try to count to 10 and remember, that most of the time, people are trying to be helpful or show their concern. I suggest you consider first, trying to acknowledge their concern, and then try to come up with an appropriate answer – for some people the appropriate response may be to vent about how hard it is to live with DM, and/or celiac disease/ and or other food allergies or intolerances. (I HATE when people ask me if I can eat what I am eating and have different responses depending on whom I am speaking to and the situation, but fortunately do not get mad, just very uncomfortable.)

    Have you ever struggled what to say to someone if they tell you they were just diagnosed with cancer? It’s not easy to know what the is the “right thing” to say.

    I think it is very good that you shared your experiences and feelings on this blog.

  13. Connie Caveness
    Connie Caveness July 13, 2012 at 7:13 pm | | Reply

    THANK YOU. My 14 yo son was dxd T1 on 6/29/10. He is a very intelligent and very independent young man. He gets mad if I “peek at his meter.” He gets mad if I ask, “What’s your number?” Twice recently he volunteered his number and I unemotionally said, “Wow.” Before I could say anything else, he went off, “Don’t say that…” It is so hard to just be quiet and not say anything. Prior to him volunteering numbers, he had a week of HIGH highs and did not tell me – like one was over 500. I think some insulin had gotten hot (he will not consider a pump because “people would see it and people would know.”) But if he doesn’t tell me, I can’t help him figure that out. I blame a lot of our disagreements on hormones AND BG. He plays football, basketball, and runs track. He is in advanced classes and makes good grades. He wants D to just be part of his life, and that is a healthy attitude. But if it is just part of his life, I do not understand why we can’t just talk about it like we talk about the day’s team practice. It is so comforting to hear from an experienced adult that makes me feel like he is “normal”!! I thank you as I wipe away a couple of tears because this feels so familiar and thus, very comforting.

    Bless you and all the #DOC!!

  14. Wendy
    Wendy July 14, 2012 at 12:53 am | | Reply

    Wow. I loved this transparent post, Amy!!! Thank you for opening your heart and sharing these deeper thoughts.

  15. colleen
    colleen July 14, 2012 at 5:44 am | | Reply

    This…I can tell him I don’t like him “judging my numbers,” but I’m sure it just makes him uneasy about what might be the right thing to say in any given situation.
    Made me smile.
    Mine has stopped peeking but – it can still be an issue for both of us. I’m already ticked off at myself and so, if he’s concerned enough to say anything, he’s doomed. :)
    And yes, the “I’m so sorry’s” get to me also.

  16. Kathy
    Kathy July 14, 2012 at 11:05 am | | Reply

    Amy, I’m talking about most PWD who are either not online or have no clue what Twiiter & Diabetes Mine even are. Almost every doctor I’ve seen and patient experience I’ve had, they’re mystified that such a thing exists. Local JDRFs are too. So I stand by my statement. Also battling a nice fat 320 mg/dL, so don’t hate me :/

    1. AllisonB
      AllisonB July 14, 2012 at 7:13 pm | | Reply

      Kathy, a private club denotes exclusivity and the need for permission to join. This is not the case with the DOC. However, it is true that we are limited by tech access and awareness. That doesn’t make it private, it just means there are barriers to entry.

  17. marydiabetes
    marydiabetes July 16, 2012 at 2:13 am | | Reply

    I have diabetes for 4 years, sometime I feel bad, especially 1year age, I feel toe numb, I feel despair, but my friend send me a kind of herbal supplement named Gluconature, I have take it for 2month, Now I feel better. If you have the same symptom, you could load on the website http://www.gluconature.com to consult online freely.

  18. sonia ensz
    sonia ensz July 16, 2012 at 7:11 pm | | Reply

    Hello my name is sonia,i have lived with diabeties for 26 years this year.. i want to thank you for your honest emotions.. i feel the same way at times..
    Exactly.. i here a lot i am sorry….. and ya .. it is not wonderful.. but thn it gives me a chnce to educate which is all i can do.. i have days were i do feel sorry for myself i know it is not good. But there it is…. anyway thnk you.

  19. Myra
    Myra July 20, 2012 at 6:38 am | | Reply

    Between my best friend with Type 1 and myself we have over 60 years of diabetes experience. Every few months one of us has a meltdown, calls the other, and declares a pity party. We cry, rant and rave, and let loose. By the end we are usually laughiing (but not always…). Pity parties and a good friend helps us – until the next meltdown.

  20. David
    David July 21, 2013 at 3:50 pm | | Reply

    Thank you for your heartfelt post, diabetes really is much harder to live with than it would seem to the blissfully non-diabetic. I have grief that lays dormant and rears up from time to time, usually as anger but sometimes sadness.

    Just the other day at the eye doctor, the assistant gave me such a look of deep sympathy upon realizing my T1 that I teared up. I much rather someone say sorry and somehow acknowledge the seriousness rather than gloss over it and say something glib like, “Oh, then you just take insulin for it, right?” (to my chagrin, I said exactly this to a T1 friend and it wasn’t until I was dx’d years later that realized how awful my response was!).

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