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Stigmatized Secrets.

I’ve spent the last few weeks keeping watch on the My Diabetes Secrets Tumblr account (a version of Diabetes PostSecret – more here) and these two submissions keep leaping out at me:

The submissions as stand-alone pieces make me feel like I’m trying to shove limitless emotions into a Ziploc bag, but what kills me is that these were submitted anonymously.  There’s still something about diabetes, and the fear and stigma associated with this disease and all its iterations, that keeps people from feeling empowered/supported enough to say this shit out loud.

This week, I received an email from some PR company professing that diabetes is a disease of numbers and control, and when lab work is “in range,” the disease essentially melts away into insignificance.

Oh yeah?

It’s high time for the psychosocial impact of diabetes to be acknowledged.  People living with diabetes aren’t ruled entirely by our pancreases … there’s a lot of heart thrown in there, too.

For more anonymous secrets, check out My Diabetes Secret.

34 Comments Post a comment
  1. “Insignificance,” my ass. My labwork has looked great for several years (ever since buckling down to make a baby, and now chasing after her for a couple of years), but I still feel out of control. I can’t wrangle in my weight. I can’t find the right mix of food and exercise without my sugars going all over the place. I have highs some days and lows other days that knock me on my butt and make me want to do nothing but lay in bed and cry. I blame a lot of my infertility woes on my diabetes. But my labwork looks fantastic. Eff you, PR firm.

    11/19/13; 10:09 am
  2. Yeah, so what does it take to KEEP numbers in range, PR Company? If they’re ever in range (for that short window of time), it doesn’t melt away because PWDs can NEVER stop the management. I think it takes more psychological effort than physical. It takes seconds to test and dose, but the awareness is “on” constantly for hours upon hours, days upon days, years upon years without hardly a moment when PWDs can ever have a moment when it’s not on their minds.

    11/19/13; 10:30 am
  3. So powerful. I can’t even type all the emotions running through me right now. I wish I could take in every PWD and Dmom the hell out of them with love and nighttime checks.

    11/19/13; 10:55 am
  4. Katie S. #

    Kerri–I totally get your post and agree with you. It’s a shame that this has to be done “secretly”. However, I can’t get behind this Diabetes Secrets page that I’ve read about on various blogs. I understand its intent–to allow people to vent and others to sympathize and not feel so alone. I can really relate even to the two “secrets” that you posted above from the site. However, to read through any number of posts on that site makes me feel pretty negative about diabetes. Everyone shares their fears, frustrations, and negative thoughts there. As I start to read down, I realize I can relate to most of them and it starts to “get me down”, so to speak. So, I choose to stay away from the site altogether. Anyone else feel this way??

    11/19/13; 11:17 am
    • Kim #

      I can understand this. We all have to go to the places that have value for us – not every resource is for everyone. :)

      11/19/13; 11:34 am
      • What Kim said. :)

        11/19/13; 12:28 pm
        • I second. I visited once, last weekend. I just want to reach out and help everyone, and I know I can’t do it. Bums me out.

          11/19/13; 3:58 pm
  5. ria #

    or, go in for a routine physical and doc asks “why are you depressed?”
    well, gee, doc, I don,t know (dealing with the highs and lows of this type 1 crap for 42 years, perhaps?”)
    no, that couldn,t be it.

    11/19/13; 2:51 pm
  6. Heart breaking. But, we also have to understand that ignorance is bliss…no amount of explaining could ever explain what it is like to live this life, just like no one could understand another persons feeling at the time of loss or struggle, no matter what that may be.

    I have to say, I have always “vented” my feelings about Diabetes, both for my own disease and especially caring for my T1 Daughter….about a month ago my husband told me he is tired of hearing me “whine and complain about it” and basically said I need to just do it, fix it and shut the hell up because it is what it is. Nice hugh?

    Words could never explain how he made me feel at that moment, and I have thought about his words every single day since. It hurts deep down to my soul. If a Dad with a wife and daughter with T1 doesn’t get it, you can bet I will never again open my mouth about my feelings again to anyone. Sad, very very sad.

    11/19/13; 5:27 pm
    • John #

      Wow Kelly, I am so sorry to hear that. I feel like apologizing for your husband. I have to say that you your story has really convicted me, though. I can easily go into that same mode as your husband when my wife vents about her health issues, which are many (non-diabetes-related). Your post makes me think that I’ve definitely said things to her like your husband that have wounded her soul, and I need to ask her for forgiveness. As well as checking my attitude at the door and giving her the kindness, empathy, help and love that she deserves. Thank you and hang in there!

      11/19/13; 6:00 pm
  7. I also gotta say I was afraid to visit this Tumblr site after reading your blog post because I knew I would cry reading others feelings….but I decided to anyway instead of hiding from it, and now crying, I sure am. :( So much heartache, guilt and rollercoaster emotions involved with Diabetes!!

    11/19/13; 5:49 pm
  8. Karen #

    That second one scares the crap out of me as a d-mom…knowing that someday she’s going to be SO tired of it all…and when staring at a 60…then a 40…when her brain can not possibly think the way she would want it to think…who’s to say she wouldn’t just lay over on the pillow and go so sleep instead of treating the low? And this stuff happens frequently to a t1 who is trying desperately to stay in range…”is she well controlled?”…what does that even mean? When folks ask that (in good, kind-hearted spirit..I have to remember that) THAT’s what I want to say…there is no such thing as “well-controlled”.

    And the t1/t2 thing? That’s just awful. But I have found myself, in my daughter’s defense, making sure that when people ask about her that they know that she’s type 1. Though if they don’t already realize that (she’s a healthy-looking 8-year-old) then they don’t know anything about diabetes anyway. Diabetes is bad, no matter what kind it is and you shouldn’t have to be ashamed of your diagnosis.

    11/19/13; 6:38 pm
    • Anonymous #

      T2′s are also healthy looking people. I don’t understand why the fact that your daughter looks healthy should make people automatically assume that she is T1 when they find out she has D.

      Kerri, thank you for this. I needed it tonight.

      11/20/13; 12:30 am
  9. Anon #

    I submitted the second one, about the low blood sugars. For me, this website is something really really special. Diabetes has given me a perspective about things that teenagers (I’m 17) should never have to think about- death, for one. A common occurrence that I see is that diabetics (especially children/teens with diabetes) push away the talk about the scary side of diabetes, instead we cover it up with inspirational stories and good times. I get it. It’s important to be positive. But for me, I need that other perspective. I need to think about it and talk about it and let it out because otherwise it ends up bottled up in my head- which can become a really scary place. Yes, I’m 17 and I should never have to think about death but I do, because of diabetes. This isn’t something you can talk about to anyone. I find it difficult to approach the subject with my parents or doctors. Not everyone can see a therapist or talk to friends with diabetes (I didn’t meet another diabetic until I was 13). This website is an outlet. An outlet that won’t judge you if you need to vent about high blood sugars or if you want to let out some deep thoughts about death. Because it’s okay to be not okay. Honestly, my submission was a thought that I had jotted down in my journal the day before and when I found this website I immediately thought, “That is something I need to share.” I’ve read some of the comments people have written about it, teenagers who have reblogged it saying things like, “This describes my whole life.” and it absolutely breaks my own heart because so many of them are unable to talk about it. Here is a place where we can.

    11/19/13; 7:08 pm
    • Kelli #

      I posted below about how I have been there too! Thanks for writing what you did. Something I’ve never told anyone: When I was a child I used to go to bed scared that I wouldn’t wake up in the morning. From ages 8-10 nearly every night I prayed that I wouldn’t die.

      Now that is morbid as all get out, and it’s pretty sad that a child ever felt that way, but it is precisely why I agree with you and Kerri that it is high time 1. The psychological effects of diabetes get addressed and 2. There is a safe place talk about things like that. and 3. We know other people have felt the same as us

      11/19/13; 10:24 pm
  10. Kelly #

    I was misdiagnosed as a Type 2 and then I was told I was a Type 1 and put on insulin. I brought my A1c down from 13.9 to a 7 in just under six months. I then developed hypoglycemic unawareness. It’s not just about the numbers! I lost my job, was afraid to drive my car and became severely depressed. Someone told me not to try to control my diabetes, but to just manage it. Knowing I will never control my diabetes, but can manage it makes me feel better and not a failure when I go high or low.

    11/19/13; 8:24 pm
  11. Lora #

    Kelly,
    We are a family of 4, 3 of which are type 1 diabetics. I lead the pack at 42 years of living with this, my husband- 31 years and my oldest son, 16years. We each deal with this differently. I will be relaying “a day in my life of duabetes” and my husband will roll his eyes and move on to another subject. My son doesn’t want to talk about it at all.. So some of this goes back to the individual, the sex (you know the differences of men and women as well as I do) and that some days we can deal with this, and other days it just sucks. Simplified, perhaps- but we all cope differently. When you are low- is he there to hold your hand until the “scariness” goes away? It is not easy on either side..

    11/19/13; 8:26 pm
  12. Kim #

    I was diagnose with type 1 diabetes 5 months ago at age 35. WTF! I am the single mother of 2 young kids and just can’t describe how much my life has changed. I stumbled on this site a month back and I have to say that I love the way that I relate with all the posts. So good to know I’m not the only one dealing with this monster every single day UGH!!!

    11/19/13; 9:09 pm
    • Becky Bloom #

      Kim, I was too. It’s a hard road and learning to adjust sucks. A lot. Especially for my kids who groan about not having certain foods in the house because it’s hard for me to see much less stay away from.
      This is a great place to read about it and I found support through Kerri when I was feeling at my lowest (insulin dependent and in the middle of a bad divorce).
      My thoughts are with you.

      11/20/13; 3:25 pm
  13. Ana from Argentina #

    I agree with Rhonda: “Insignificance” my ass. There’s nothing “insignificant” about diabetes, and the same applies to so many other “chronic conditions”. But you either get a hold of your life, manage your condition the best way you can and live a full life, or just give up. We all have dark moments, regardless of diabetes, and a person’s attitude to life is more often than not what makes the difference. Every cloud has a silver lining… and I thank my mom for taking this idiom and turning it into an adage. Growing up I could always count on her finding something positive in every negative. When I was diagnosed at age 43 I was shell-shocked: what had I done to deserve this? And the answer was: absolutely nothing! I just had to learn (and am still learning) to cope with and manage this “demon”. It’s not easy, but life is not easy! You can either feel sorry for yourself, which can work for a while, or you can choose to be at the steering wheel of your life and try to do your best, which is all you can really do. I try to follow in my mom’s footsteps, and hopefully my children will try to follow in mine, minus diabetes and a few other not so smart choices of course!
    Stay positive and try to help someone every day! But you can only help those who want to be helped. Kerry, you and the other people in the DOC help me every day, and that counts a lot.

    11/19/13; 9:22 pm
  14. Kelli #

    This totally resonates with me. I have been there in bed on that day when I was 60..then 50…then 40 fully aware of how low I was going and how close I was to dying, just thinking eff you diabetes. I am also the girl who heads off to work and pretends that my disease isn’t any big deal. It is scary to allow yourself to be aware of how fragile our lives are. Dear chronic suck-fest…I just want to ignore you for once! Diabetes is a stubborn disease that doesn’t mix well with this stubborn girl sometimes!

    I was diagnosed T1 when I was 6….I’m now 23. It has just been in the past 5 years that I have found my voice to talk about anything related to my health. It has been incredibly empowering, and my health has improved immensely because of it. A lot of that thanks goes to Kerri for all the honesty she posts on here on her site, and to the others in the community that remind me I’m not the only one giving Diabetes deuces and staying healthy in spite of it! I think any amount of honesty and secrets we have that get out in the open, the closer we are to saying them out loud!

    11/19/13; 10:12 pm
  15. Anon2 #

    That makes so much sense. I agree with you that it is good to be able to acknowledge that those bad and scary feelings are there…that some days maybe you don’t want to be the strong, happy person with diabetes who can do anything. And I think if you are feeling that way it’s good to have a place to go and know that there are others who do feel the same. You certainly write very well, especially for 17. I’m so very glad that you shared your thoughts. Not only will it be helpful to others with similar feelings, it will help those who love someone with diabetes….

    11/19/13; 10:33 pm
  16. Brad #

    I can relate to that first post. I’m type 2, so surely I’m overweight, lazy, and I’ve eaten way too many doughnuts, right? Hell, I wish! Wrong! Hell, I’m slim, active, and haven’t done too bad with sweets, but that’s what everyone assumes at first. I must have ate too much candy and burnt out my pancreas. There is just so much misunderstanding about this disease, and it’s frustrating.

    11/19/13; 10:56 pm
  17. That first one kills me! When are we (the universal WE) going to stop blaming each other and start empowering and educating?

    11/20/13; 2:20 am
  18. Sandra #

    The reality of Diabetes.
    My 11 year old son came to me last night shaking and crying, having a panic attack. He admitted to me that he had been sneaking food because he’s constantly hungry. He also told me he was afraid because he felt there was something out “there” waiting to punish him for sneaking food.

    He said this would probably explain the highs he’d had as of late. I told him he was probably right and that we just needed to add more insulin if he wants more carbs with his meals and snacks.

    All this because his dietician stresses any weight gain or no wait loss at his check-ups.

    I’m over it! If he’s hungry I’m going to feed him!

    11/20/13; 10:44 am
  19. Amanda #

    I’m a little disappointed to see that the mydiabetessecrets blog is being censored. I know a couple people, including myself, who posted secrets that didn’t get published. Kind of sad that the owner is deciding what the dialog about diabetes should be for everyone.

    11/20/13; 11:43 am
    • I am sad to hear that it’s being censored, too, but are you sure your secret isn’t just queued up? I know a lot of submissions were received, and that Chris Snider works through them after hours, but doesn’t post them all at once.

      11/20/13; 11:52 am
  20. Hey Amanda.

    As of this comment, there are currently 85 posts queued for publishing on the blog. Right now I have the blog set to post 5 times a day, but given the number of submissions I may need to turn that up.

    As far as censorship is concerned, that does not occur.

    For the few submissions that come in from a logged-in Tumblr user or someone using their personal email address, I’ll copy their text and resubmit it myself as ‘anonymous’ to give everyone the same respect.

    11/20/13; 1:24 pm
  21. Anon3 #

    “I am a diabetes educator. I get so annoyed with people who have T2. I have to catch myself from rolling my eyes because all I hear is complaining and no changing. Sometimes I just want to say “I don’t care”.”

    This secret was posted today and I was, frankly, incredibly disappointed to see it. It’s this type of attitude, particularly from healthcare professionals, that creates the need for anonymous diabetes confessionals in the first place and the fact that this person felt safe enough to submit this makes me incredibly uncomfortable.

    11/20/13; 8:47 pm
  22. None of this should be said in secret all the people posting on this tumblr need help. They need to reach out to people in real life or on the DOC. With all the good work people do: writing blogs; interacting with people on twitter and FB groups; creating and joining teams like TeamType1 and TeamBG, it is nothing short of sad that these people who post on the this tumblr page are posting there and not reaching out for help.

    11/21/13; 2:44 am
  23. After reading this post, all I can say is “thank God the task of advocating for those living with diabetes isn’t up to you or I alone!” The profound ignorance of non-diabetics continues to astonish me (even after 12 years of living with T1D). The only upside to our situation is this: it’s a project that we all can contribute to, each in our own way.

    We don’t, for instance, all have to devout ourselves to revealing the psychosocial impact of diabetes. We don’t all have to devout ourselves to teaching people about what causes diabetes.Each of us has something to contribute.

    PS what was your response to the PR firm? (I don’t have to know, I’m just curious)

    01/4/14; 4:24 pm

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