February 22, 2011

Peace of Cake

Wednesday is the fastest hour on the internet for people living with diabetes. People from the DOC gather on twitter for the #dsma chat, facilitated by our own Cherise Shockley. Each week there is a theme, and Cherise asks the questions. It’s always wonderfully dynamic dialogue because we might all have diabetes, or be the parent of a child with diabetes, but the collective experience is varied so the responses are too.

#dsma

#dsma

In addition to the weekly chat, a couple of weeks ago, Cherise and the crew over at the #dsma website initiated the #dsma blog carnival. Before you’re all like, “Carnival!”, the sad news is that there are no funnel cakes, tilt-a-whirls, or giant teddy bear prizes. The happy news, besides the fact that there are no clowns, is that there’s lots of bloggy goodness. Blog Carnival…

… is your chance to explore a recent DSMA question in more than 140 characters. At the beginning of each month, the blog carnival topic will be announced here on the DSMA blog. Join the carnival by writing a post about the topic of the month on your blog and sharing a link to your entry in the comments section.

The topic for this month’s first ever blog carnival was adapted from the “Fill-in-the-Blanks” #dsma chat on January 26th. To participate in this blog carnival, DOC’ers must complete this statement:

“The most awesome thing I have done in spite of diabetes is . . . . “

I’ve seen several entries, and they are as varied as the people and the responses on twitter. People have traveled the world, become health advocate superstars, had children, and are raising diabetic kids that are healthy and well-adjusted and doing all the great, cool, kid stuff that non-D kids get to do.

Outside of the blogging community, people with type 1 do stuff that seriously boggles my mind, like climbing Mt. Everest, and completing triathlons. These are amazing feats that frankly, defy the logic of diabetes as I know it, and that’s just a small sampling of some of the truly above and beyond things that the pancreatically challenged have done. If I could jot that sort of thing on my resume of life, I’d proudly do so.

I didn’t think I had anything particularly interesting to add, at least nothing that inspired me to sit and write. The last few years aside, for most of my life, I’ve just barely scraped by with my life, and that didn’t feel impressive or even blog-worthy to me. In lieu of contributing, I’ve been appreciating others’ responses to blog carnival, checking out their accomplishments, and waiting to see what the topic for March’s blog carnival would be.

Since blog carnival wasn’t on my blogging agenda, what I really wanted to write about this week, above all else, was National Eating Disorders Awareness Week. It’s an important issue to me because I want others who are struggling to know that recovery is possible, and I think it’s an important issue for the diabetes community, one that deserves a little spotlight now and again.

Naturally, I’m very invested in raising awareness about the practice of insulin omission for weight manipulation. It’s a serious problem, especially amongst women with type 1. From the article, “Identifying and Treating Eating Disorders in Women with Type 1 Diabetes” by Dr. Ann Goebel-Fabbri in Review of Endocrinology:

Polonsky, et al looked at 341 women with type 1 diabetes aged 13 to 60 years and found that 31% reported intentional insulin omission with 8.8% reporting frequent omission. Among this group, rates of insulin omission peaked in late adolescence and early adulthood with 40% of women aged 15 to 30 years reporting intentional omission. Both the fear of weight gain and general diabetes-specific distress independently predicted insulin omission in these women. More than 40% said they were afraid that lower blood glucose would cause them to gain weight and close to 45% believed that appropriate insulin use would cause weight gain, and approximately 36% believed that a target of near-normal blood glucose control would cause them to become fat.

That’s frightening, and those statistics should be alarming to all of us. That being said, eating disorders are not solely the domain of type 1 diabetics. When I did a quick search for research on binge eating disorder (BED) and type 2 diabetes, I didn’t find much other than the suggestion that BED is more prevalent amongst obese type 2 diabetics. Common sense dictates that binge eating is associated with obesity, and obesity is, of course, associated with type 2 diabetes, and BED and diabetes are both associated with depression, so it seems that there’s a lot of room for research, in addition to increased awareness, of this issue also.

NEDA week

As we know, food is a potentially, almost unavoidably troublesome realm for people with diabetes. Our relationship with it is complicated, and there’s a fine line between fastidious diabetes dietary management and an eating disorder. All too often, hunger seems to take a backseat to maintaining BG’s when it comes to what, when and why we eat, so it’s no wonder that many of us have found ourselves struggling to achieve some semblance of a quasi-normal relationship to food and our bodies

In recognition of National Eating Disorders Week, yesterday, I sat down to write about it, but I encountered the problem I seem to have whenever I broach this topic. Moving past the facts and figures and basic information to speak from my heart about this issue is really hard for me.

Even though I’m recovered, I’m still saddled with shame. I always worry about what others think when they learn I had an eating disorder. I bristle with discomfort at the prospect of reminding my friends and family of what was. I have a pending job application, so I’m concerned about the review committee discovering this dark secret. Of course, it’s still there to find, and one wouldn’t have to dig very deep, but it’s my delusion that as long as I keep it off the front page here, it’s less likely to be found. I’m similarly concerned that my pending school application might become a casualty of my disclosure. With all of that clouding my mind, and inhibiting my thought process, the ideas and words don’t flow. So I found myself stuck, unable to follow through with my desire to post something that would raise awareness, and be meaningful and reflective of my personal experience.

Then I had a revelation. I knew how to fill in the blank.

Just like that, my tears are streaming down my face. I remember thinking to myself, “I’ve had an eating disorder for 2 years… 5 years… 10 years… 15 years.” After 15 years, I thought, “It’s going to be 20 years. I’m never going to overcome this, and I’m going to die because if it.” Almost two decades of eating and throwing up, both resenting and coveting food, and hating my body. Oh God, how I hated my body. Not just because I forever thought I was fat, and when I didn’t think I was fat, I was terrified I would gain weight. I hated my body because it had failed me, and I saw it as my enemy. It was diseased and broken and not worth the space it consumed.

So I punished it, eating unimaginable quantities of food in a single sitting. When I wasn’t eating, I was thinking about food I would eat, food I would buy, food I would make, food, food, food. And I almost never thought about diabetes. I took whatever long-acting insulin I was using at the time, and there were some years, when I only took half of that if I even remembered to take it at all. Years I didn’t bolus unless I felt so sick I thought I might go to sleep and never wake up. Years I’d eat big bags of Skittles or M&M’s or cookies or spice drops, call that dinner, and not take a drop of insulin. I’m ashamed of all that, and it’s not even the worst of it. Today, I don’t think about all of that very often, partly because it’s in the past, but also because it overwhelms me with sadness, grief, shame, regret, and more than anything, the desire to undo it.

Sometimes though, when I’m at a restaurant, cutting my bacon cheeseburger in half and splitting my fries into two servings, a meal for now and one to take home for lunch tomorrow, I think about how different my relationship with food is now. When the waitress tries to entice me with dessert, I consider whether or not I’m actually hungry, and unless it’s a special occasion, I pass. “Gosh, that sounds really good, and I love ice cream/cheesecake/brownies/banana pudding/bread pudding/chocolate cake/apple pie/peach cobbler, but I’m full.” It’s a completely different experience, listening to my body, and respecting what it tells me about whether or not I’m hungry. Compared to when I was binging, I eat a tiny fraction of what I used to eat, but I enjoy it exponentially more now.

Diabetes doesn’t make it perfect, as you know. I do have to consume carbs when I’m low, even when I’m not the slightest bit hungry, which I absolutely loathe. I do have to snack to fuel activity and exercise if there’s too much insulin on board. I do have to conscientiously refrain from over-treating lows when I’m hungry. I will make decisions about what to eat based on my BG, especially when it’s high, even if that means foregoing what I’m craving. Like I said, it’s not perfect, but I think it’s as good as it gets, and overall, I’m happy.

The most awesome thing I’ve done in spite of diabetes is I’ve made peace with food and my body.

25 Responses to “Peace of Cake”

  1. Scott says:

    That is pretty awesome, Lee Ann!

  2. Thank you again for such inspired & powerful vulnerability.

  3. Auntly H says:

    That is totally awesome. And I think if the employer and school to which you’ve applied want something shiny on the surface rather than your authenticity, they aren’t worthy of you.

  4. Rachel says:

    Do you know how glad I am to know you on this journey? Because I am. Thank you for being you and sharing what you do.

    (As an aside, I do believe that some of my “borderline” eating habits (skipping meals early teens, binging in college) messed with my metabolism – both thyroid and diabetes wise.)

  5. Sarah says:

    What an amazing, real, true post. Thank you for sharing it with us. I identify with so much of what you wrote. I researched t1D and ED when I was in grad school just for kicks, and gave the literature to my endo, to explain the crazy #s (BG, weight, HBA1c, etc.) that were coming back time after time. I never did find a therapist who could “get” the t1D part of it. Some good endos and 25+ yrs. of hating myself later, I’m much “better” but the mess will never be completely gone, as you well know. Peace with food and body is such an astounding realization. I’m so glad that you’ve found it. Good. For. You!!! <3

  6. Cherise says:

    I seriously need a tissue! Leann—Beautiful, Beautiful post! I am glad you participated!

  7. Penny says:

    LeeAnn, I am so honored by your honesty in your life. I am proud of you and all that you have realized and overcome in life. This was a beautiful, heartfelt post and for that I thank you.

  8. Hallie says:

    That’s HUGE! That is amazing thing to do. An amazingly difficult thing to do! Thank you for being so open and so honest. You’ve touched my heart and I know that you will touch the hearts of others!

  9. Meri says:

    And that…is amazingly awesome! Peace is a gift for sure!

  10. I’m so glad you wrote this! When you first said at the beginning you weren’t going to answer this I was like, “Whaaaat?!?!” Because you’ve done so much in spite of diabetes! And I’m glad you realized this. You are so stinkin’ awesome.

  11. Karen says:

    I am so glad you decided to participate in the blog carnival. Making peace with food and your body is such a huge accomplishment. I agree, diabetes really twists our perspective of food and makes it so complicated. I can’t even imagine throwing an eating disorder on top of that. Thank you again for opening up and sharing with us. {{{hugs}}}

  12. Christel says:

    You are going to owe me a new pair of shoes and some hand lotion, because I keep standing up and clapping loudly at your posts. Thank you for sharing. It means so much for those who still struggle.

  13. [...] read Lee Ann’s post today about National Eating Disorders Awareness Week and it stuck with me. Not because I’ve [...]

  14. tmana says:

    Thanks for posting on this. I’m a bit late to the party of finding this Eating Disorders Awareness Week, and I’d really like to do something highlighting the posts I’ve found this week relating diabetes and eating disorders. (It may not show until next week; right now I really have to get one post in before that, slapping the wrist of a couple of talk show hosts before Wednesday’s behavior gets too old.)

  15. [...] know it, but this week is National Eating Disorders Week. And in light of that, Lee Ann shares her greatest achievement despite [...]

  16. Sandi says:

    I’m so happy to have read your post. My 4 yr old daughter was recently diagnosed with Type 1. It is my greatest concern that she will struggle with eating disorders. I’m so glad you’ve beaten it!

  17. Lisamarie Antonicelli says:

    Thank you for your heart felt and real story. Having T1 for 34 years, I appluad the peace you have gained the honesty you share with others. I hate having to eat and feel it is a chore. You opened my eyes and heart!

  18. Lee Ann, I think you know already that I love you dearly.

    But just in case you doubt it, I love you dearly. :-)

    I’m still looking for that peace between food, diabetes, and my body, and it’s a hell of a fight. While I can’t identify with all of your experiences, there are some I can identify with, and it is scary.

    You nailed it when you talked about our relationship with food and the fine line.

  19. [...] a paragraph in Lee Ann’s blog post where she gives some scary statistics about insulin omission. Many [...]

  20. Louise says:

    Hi,
    This has made me cry. I am struggling so bad with diabulimia right now and have been through anorexia, binge eating and the full works for the past 8 years now since the age of 16 and hate myself. I keep putting myself through everything you said in your blog and just want to stop. I want to be where you are now and I will get there!!

  21. kira says:

    You inspire me. To be strong and fight, to keep going.

    All I can say is thank you.

  22. T1 Diabetic says:

    Hey, I just read your post above and I am really happy I have read it. I have T1 and have been suffering with binge eating, bulimia and diabulimia for the past 4 years. I have decided I must control my diabetes and I need to stop worrying about my weight because I know I will regret it in the future. I really hope to get to that place that you have come to.

    xx Sarah

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