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Posts tagged ‘emotions and diabetes’

Do You Hate Diabetes?

I asked some friends on Facebook if they hated diabetes, and the answers* were as varied as the folks responding:

  • “I hate it, the hassle, and the complications but I do not hate the growth amd strength I’ve achieved or the family I’ve gained because of it.”
  • “I don’t hate it as a thing but it does annoy me. At the same time I am very thankful that if I must have a problem of this type at least there are good doctors and advancing technology to help me live a normalish life.”
  • “I didn’t used to hate it when I was younger-I think because I had camp. But at this point, to be honest, I do tend to hate it.”
  • “Do I hate diabetes in general? Yes probably … I hate that it causes so much pain and suffering all over the world. I hate that people die from it and that companies exploit us living with it to make crazy profits. But do I hate living with it? Yes I dislike it very much.. and at times in rage I would say hate. But diabetes has opened so many doors for me and taught me a great appreciation for life. It’s easy for me to say that however within my environment. So who am I to judge anyone for saying that they hate it!”
  • “I don’t hate it, but it makes me tired and exasperated too often.”
  • “I don’t hate it. When I think about the ailments some of my other friends/acquaintances have, I am thankful this one isn’t a death sentence.”
  • “It’s a love/hate relationship. I wish none of us had it, or had to deal with the daily demands of it, and all the bullshit that comes with it. That’s the part I hate about it. But without it, I wouldn’t have met many of the people that make all the difference in my world, what I’m going back to school for wouldn’t be as clear, and my profession wouldn’t be as meaningful to me and (hopefully) others. I might not have as much empathy for others if I hadn’t lived my whole life with diabetes. Diabetes keeps me from being an asshole. Mostly.”
  • “I don’t hate it. Hate stirs up sadness, anger and emotions of feeling trapped. Hard to work with it if I hate it. But I wish to the depths of my core that I didn’t have to face it every day; every minute. It’s hard. It’s horrible. But it’s not hate.”
  • “I’ve always wished I didn’t have it (obviously), and I hate what it’s done to my body and how much it’s cost in both money and effort, but I’ve never hated the disease itself. It’s just part of who I am.”
  • “On some days or in certain moments, YES with a passion. However, most of the time, I’m kind of indifferent about it or it can feel like a minor annoyance or inconvenience. On rare occasions I actually feel that it gives my life more meaning.”
  • “Every damn bit of it, except for seeing how exceptional my daughter is in spite of it.”
  • “On an overall day I don’t hate it but when I stop to think about the expense or the guilt when I pig out on something or thinking about potential long term effects I hate it. I also hate it when it interrupts a full night of sleep which is does most nights but during the day I’m not walking around with hate on my mind.”
  • “No. Hating takes so much energy, emotion & attention. I already give diabetes so much of those. I don’t want to give it more.”
  • “No time for hate. To busy being SO ANNOYED.”

  • “I feel hate is too strong a word. I don’t enjoy living with it but that’s the thing… it lives with me not in place of me. It doesn’t stop me from particular events in life but it does have me consider them more. For instance I have never had an A1c lower than 8% and therefore have never been given “the go ahead to ttc ” but in saying that it won’t wholly define our choice, our timing nor the outcome.  It can be hard, tiring and frustrating but it isn’t worth hating.  I probably wouldn’t be the person I have become, without it.”
  • “Hate maybe isn’t the right word…but I certainly resent it. I get that people appreciate the community and relationships they’ve made because of diabetes, but didn’t we seek those things out as a way to cope? Just think of what we could have done if we hadn’t felt the need to find that support. I doubt I’d have a spotless medical record without diabetes, but starting with a level playing field would have been nice.”
  • “Well, I don’t hate mine, but I kind of hate other people’s. Like the fact that so many people here hate it makes me hate it. But if it were just mine, I wouldn’t be that mad about it.”
  • “I do not. I hate many things about it but, at this point, it’s all I know. If a cure were found tomorrow, I would be utterly confused.”
  • “Nope. I barely think about it. It’s just something I do. Part of my daily routine.”
  • “It is bits and pieces of the fabric of my girls. I wish terribly, fiercely, sometimes desperately that it wasn’t a part of them or anyone else. But hate … if I am honest, I can’t hate it. That emotion would tear me up. I have to focus on being strong for them. So I focus on the things that we can control and I work hard to make it as easy, ignorable and stress free as possible.”
  • “Hate is such a strong word. My feelings towards Diabetes aren’t that strong. I have stronger feelings about people who are hateful and disrespectful. Diabetes certainly takes a back burner to that. I would certainly be ‘me’ without Diabetes and it would be amazing if it were obsolete but I’m not going to put that much thought into something I cannot control.”
  • “Sometimes. But feeling constant hate would make my life a lot more stressful I think. Most of the time we co-exist with various degrees of annoyance. Sometimes I would like to punch it in the throat.”
  • “More then I could ever explain.”
  • “Nope. Met a lot of great folks in real life and online due to it. It’s something that I deal with on a low level constantly and so it doesn’t really flare up to a major pain for me. Everyone has something. I’d rather have something that is manageable, invisible to the world, and commonly understood by the general public on a basic level.”
  • “I don’t hate it. I have some semblance of control over it and at least technology and management is improving drastically all the time. I have another medical condition that is a total wild card, that while it (probably) won’t kill me, could make impossible to walk or use my hands at some point, makes me much more physically tired than diabetes, and makes me physically unable to do certain things. And has far far less chance of getting better or being cured. If I could “just” have diabetes, I’d totally do that.”
  • “Yes. I’m not going to sugarcoat that one. But I don’t hate it enough to let it cripple me/us. I don’t give anything that much power over me.”
  • “Sometimes. I hate that there are many aspects of life I can’t be spontaneous with, and that some times I plan and nothing goes to plan. I hate that I constantly think about health insurance and the role that diabetes plays in my financial stability. There’s a daily, if not hourly, fluctuation that exists when it comes to feeling positive, neutral, and negative about my diabetes.”
  • “Well, I sure as hell don’t love it!”

For me, after 31 years of type 1 diabetes, I don’t carry around a lot of anger or shame about diabetes, but I don’t harbor warm, fuzzy feelings.  I don’t hate it. I don’t like it and would get rid of it in a heartbeat if given the chance, but I don’t spend the day loathing it. (Some days, yep.  I can’t pretend to be happy about this condition.  Especially now that I’m getting older and Things are Happening that make me wonder, “Hey, is this diabetes?” or “Hey, is this just the aging process?”)

But I think that’s because it’s mine and mine alone. If one of my children had diabetes, I’d hate it seventeen different ways.

The responses from people on Facebook were so diverse, just like our community.  And I think responses could also change depending on what’s going on in the world, in their lives that day, or what result might have just stared back at them from a glucose meter. No “right way” to feel. Whatever way you feel is right.  Diabetes is part of every day, and the emotional influence is has on our lives is rarely discussed but nonetheless pervasive and constant.

But I’m glad we’re starting to talk about it.  No matter how we feel about diabetes on any given day, the community that’s bloomed around this disease continues to inform, inspire, and redefine living with diabetes.  That’s something worth loving.

 

 

 

(* All of the following bullet points are from comments on th FB thread.)

Running the Gamut of Emotions.

In my diabetes life, emotions are right up there with insulin and food as influencers of blood sugar management.  And I wish it wasn’t so, because stress and excitement are hard to “plan.”  (Replace those actual quotation marks with finger quotes, because they fit the bill a bit better.)  And the emotions that come up as a result of diabetes crap?  Holy shit, they are a circus all their own.

The emotions of diabetes are a thing for me, and one that I need to work to manage as fastidiously as I work on my numbers.  Which is why my Animas column this month is about that exact thing:

“Diabetes is more than the lab work results and pricking fingers, taking insulin, counting carbs.  That’s the to-do list we have to check every day, but it doesn’t even begin to touch the other side of life with a chronic illness, and that’s the headspace part.  Some of my academic friends call it the psychosocial part; I think of it as the emotional portion of managing my diabetes, and in my life, managing my headspace is as important as managing my blood sugars.

There’s a whole range of emotions connected to diabetes that I run though on any given day.”

For the full article, click over to my columns at Animas.  And for more on emotions and diabetes, you can basically read anything I’ve ever written here on SUM.  🙂

Diabetes Food Lies.

So many rules were slapped into place immediately upon diagnosis, with diabetes feeling like a disease of “don’ts.”  Don’t eat cookies, don’t forget to measure your food, don’t leave the house without your meter or insulin or glucose tabs, don’t go to bed without checking your blood sugar, don’t eat too much sugar-free candy or else you will take up temporary yet violent residence in the bathroom.

But some of the don’ts were more subtle:  like “don’t allow the disease that’s built around obsessing about food to let you become obsessed with food.”

My mom used to hide packages of cookies in her closet, and I’d wait until she was in the shower to steal into her walk-in and grab cookies by the fistful.  I’d eat until my stomach ached and I didn’t take an injection to cover my indulgences, and to this day, I still grapple with the “why” of my actions.  I know I am not the only kid who did this.

Guilt and food went hand-in-hand right away for me, as a kid with diabetes.  I felt guilty about eating those closeted cookies, and even more guilty about lying to my mother about my actions.  And yet I did it anyway.  I have a very clear memory of hiding a carton of ice cream underneath the couch upon hearing my father’s approaching footsteps, afraid not of him telling me I couldn’t eat it, but being angry that I didn’t care enough to take insulin to cover it.  I have no idea why I never bolused for those furtive snacks; it was as if taking insulin for them forced me to acknowledge that I shouldn’t have eaten it in the first place, as though the bolus itself made the action real, instead of the resulting high blood sugar.  Or, you know, chewing and swallowing.

I never wanted to have that high blood sugar.  I just didn’t want to have the restrictions, and my way of rebelling against them seemed rooted in pretending I didn’t have the rules of diabetes to own up to.  Rebelling was so subtle, and so easy, for me.

Now, as an adult, I still find my feelings about food to be complicated.  I feel very lucky that I have never dealt with an eating disorder and I always accepted, even if I didn’t always like, the shape and layout of my physical body, but diabetes has a way of making me view food through a lens that my non-diabetic friends don’t share.  My mind knew that numbers on the scale or the size tab on the back of my pants didn’t matter as much as number on my meter, but still, it is always a struggle to remind myself of that fact.

But the guilt that comes with my relationship with food, as a person living with type 1 diabetes, is always on my plate.

I live in my own house with my husband and my daughter, and I still have that urge to hide my food.  Last night, I had an uncomfortable low blood sugar reaction that I decided to use the candy conversation hearts in the deli drawer of my fridge to treat, instead of glucose tabs, and as the deli drawer creaked as it slid open, I wondered if my husband thought I was just “sneaking candy.”  (For the record, Chris hasn’t ever, ever made me feel guilty or judged for what I’m eating.  The guilt isn’t borne from the reaction of others, but from my own projected perceptions.  It’s a weird head game.)  Some of the thoughts remain, but my mini-binges stopped long ago, once the don’ts of my mid-1980’s diagnosis of type 1 diabetes gave way to today’s modern insulins, meters, and mindsets.

A few days ago, a parent wrote to me and asked me why her child with type 1 diabetes would lie about eating certain foods.  And I had no idea what to say, because I still don’t know why I did it myself, or why I still sometimes have the urge to do it.  All I know is that even with a supportive family, friends who don’t judge, access to like-pancreased people, and a mindset dominated by confidence in my diabetes management, I struggle to explain what made me binge-eat those cookies, or binge-lie about doing it.  And I don’t know why, decades later, it’s still hard to say out loud.

[This week is National Eating Disorders Awareness weekWhile this post is not about an eating disorder, it is about the disordered mindset that can come along as part of a disease that is anchored in food.  If you’ve ever felt guilty about your food choices or perceptions, you are not alone.]

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