Wednesday, May 29, 2013

Complication

Complication.

That's such a gentle word in normal parlance. A hiccup. A head scratcher. A riddle.

How will we fit an extra chair at the table? Oh dear, that's a complication I hadn't considered. How do you solve for X in this equation? Well, that's a little complicated. Let me think. What's going on between you and your ex? Eh, it's kind of complicated.

To people with diabetes, the word complication is code for "quietly life-shattering." It's a code word for failure.

The list of possible complications from diabetes is ridiculously depressing. I'd list them here, but between direct and indirect correlation, the list would be so long that I couldn't be sure to exhaust the possibilities. Essentially, if a system or organ requires nerves, blood, or oxygen, it's fair game. Eyes, kidneys, heart, lungs, reproductive organs, skin, bones, stomach. I can't think of a system that's off-limits. It's awful to think about. So we don't. Most of us online, I mean. We choke it down and push it back and we don't dwell on it.

Dr. Bill Polonsky (love him) likes to say, however, that well-controlled diabetes is the leading cause of NOTHING. That reassurance always bolstered me when I'd let my thoughts wander to darkened corners.

But then when I wander into the many parent forums where I lurk and see parents reassure one another with "but all of these people with complications, they don't have the tools that we do. They didn't take care of themselves like our kids will..."

It makes me stop and grieve for the parent whose child passes away while sleeping - the parent who was not to blame and was doing everything "right." It makes me think of my friends with retinal problems or nervous system problems or tingling in their toes, regardless of whether or not they have managed their diabetes well.

And it makes me righteously angry.

We have to stop shaming the victims. Let's stop writing our fellow PWD off as worst case scenarios. Oh, but it won't happen to me. Surely that other person...they did something...or didn't do something...what? to deserve it? Isn't that the implication?

When I'm trying to prove to the world that I can accomplish anything with diabetes - that I'm a go-getter girl and that I'm healthy as a horse - my dear friend with the scar over her heart from heart disease doesn't fit my narrative. Her truth is inconvenient and it makes me uneasy.

My friend whose diagnosis was nearly 20 years after mine and yet already has neuropathy in his feet. He takes good care of himself. His truth is inconvenient.

A few years ago, I was invited to an event by my local JDRF. I was alone at a table with four adult type 1 strangers...who all had noticeable vision-related complications. I was new to meeting other people with diabetes. I squirmed in my seat. A lot. I didn't have a complication. Why was I spared?

By all rights, say some of us, it should be ME considering the care I once took of myself. It's called survivor's guilt.

I believe that we need to be more honest that this disease is ruthless and unfair and that the truth is that complications will befall some of us and others of us will remain unscathed. There are people who reach 50, 60, 70, 80(!) years with diabetes and have no complications. There are people who have had this for 5 years and have been hit with something unexpected.

And we all have the same diabetes. Regardless of type, regardless of tools, regardless of care, we have the same disease.

During the Diabetes Hope Conference last week, Ilana asked "How do we acknowledge the luck factor involved with complications while still acknowledging our own degree of agency?"

Jeez, I wish I knew.

I wish I had been able to sit at that JDRF event table and not feel simultaneously guilty and frightened by others' lazy eyes and surgical scars. At that time, I couldn't look past my own discomfort to see those people as more than cautionary tales. Victims of a dark era's diabetes care. It won't be me! I'll recommit myself. I'll...I'll...

I'll stop deluding myself. It could be me. It will certainly be someone I know and love, at least. In my time online, I've lit blue candles for children I didn't know and now won't ever meet. And I've said a lot of encouraging, supportive words to people I do know about their complications and their bad news.

And whether they tried or didn't try, had the best care and tools and education or didn't, it's not their fault.

Complications are not your fault. You have been dealt a lousy hand. You gave what you could when you could. And though sometimes it may seem like you gave up, maybe 'up' was all you had to give.

This is a hard life, this diabetes.

The media and your cousin and your co-worker are quick to tell you about someone who didn't take care of themselves and it's as though they're saying that that poor soul got what they deserved. And perhaps they're just as quick to say, oh but you take such good care of yourself. It's such an uncomfortable kind of reassurance.

It's not your fault, and yet we must encourage you to do your best to stay one step ahead of it. To stay healthy. To give diabetes no room to try to take your health from you. BUT if diabetes inches in and chips away at the best of you, forgive yourself and one another.

Forgive yourself for the cobwebs in your eyes and the numbness in your feet. Forgive yourself for the lost limb and the hypo unawareness and the cataract and the frozen shoulder. Forgive.

I know.

It's complicated.
Mommy, you're beltloop is beeping again.

41 comments:

  1. Beautifully said. Well done (typed with tears streaming down my cheeks). xo

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  2. Mel,

    This is brilliant and so on target... I'm with you on the guilt, it isn't fair that I basically ignored diabetes for four decades and have no complications. At times, trying to remember that life isn't fair and there are somethings that we truly have little control over makes me sad

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  3. You are so right. It's hard to explain why some people are lucky and others are not. I guess that applies to diabetes in general, though. My personal philosophy is to do my best, and hope for the best. Beyond that, it's out of my control...

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  4. YES! My cousin recently when into DKA and everybody shouted "WHAT DID SHE DO???" And while she isn't the best at taking care of herself (teenagers!) it does not mean she deserved DKA. NO it does not.

    Although I have to disagree with one point. I have never found comfort in the statement that well controlled diabetes leads to nothing - because I have always felt it is a sneaky way of saying if something happens, I wasn't well controlled. It always bugs me - it's the point of this post - sometimes well controlled diabetes does lead to problems, because it's still diabetes.

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    1. I have to agree with you, Heidi. Bill Polonsky is amazing and a great inspiration, but I don't think his statement that well-controlled diabetes is the leading cause of nothing is accurate, and it's always rubbed me the wrong way. I feel like it suggests that those who develop complications did something to bring it on themselves, and ignores the reality that diabetes is hard to manage, so even when people are very on top of it, complications can occur.

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    2. I'm actually OK with the quote. "Leading cause" only addresses probability, not certainty. To look at it another way, you could say that drunk-driving is the leading cause of car accidents (I have no idea if that's true or not, by the way). That doesn't mean everyone who drinks gets in an accident, nor does it mean everyone who crashes their car has been drinking. Sometimes people do wrong and get lucky, sometimes they do right and are unlucky.

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  5. Nicely stated ... As a mom of someone with T1 I find that is often impossible to have an honest conversation about fears of potential complications with another T1 parent ... There seems to be a certain understood etiquette around discussing complications ... First complications are simply not discussed and when they are the conversation is always started with the caveat " this wont happen to you because you are doing a good job" ... I think it is mostly a coping mechanism ... It is a thought process that allows you to make it through your day ... And I totally get it! ... But at the same time you are soooo right ... It's not completely honest ... Which is why I love this post so much ... Because it is honest! So thank you!

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    1. "Understood etiquette." That's exactly what it feels like. Spot on.

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  6. Thank you for so eloquently stating many of my own views on this topic. 20 years with T1D, I work my butt off but with mixed (immediate) results, and I know I'm _lucky_ that I have no complications right now. Is it okay if I link on FB?

    --Karen Lipinsky

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  7. This was well said, Melissa. thank you.

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  8. Diabetes always seems to come with a side dish of guilt, no matter what kind of complications (or lack thereof) are in play. Really beautiful post.

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  9. Beautiful post. I especially love the part about how when anyone gives up, that might be all they have left to give. Been there, done that, as you know. It's a rough position to be in, but this disease can be so depleting. I understand people without diabetes not comprehending that, but it riles me up for people in the D community to dole out blame when other diabetics have complications.

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  10. I wanted to add that as I recall from reading the recent articles about the Joslin medal recipients, all of those people were reported to have had cardiovascular issues. I felt like the suggestion was that heart and cardiovascular damage is essentially inevitable... which is not to say we should give up trying, but it's important to attend to our heart health, take preventive actions, and manage any problems that arise.

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  11. Very well said -- thank you for summing up thoughts that I can never adequately express myself. The line that bugs me the most, that I hear all the time, the follow-up to depressing news ... "but he/she didn't take care of themselves." That line bugs me like no other, and yet I never know what to say in response. I want to defend that person, take the blame away. Most people have no idea.

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  12. Thank you for this post. I had to read it twice and have tears in my eyes. I was diagnosed less than 2 years ago and unfortunately have suffered complications. Within 2 months of diagnosis I was having emergency surgery on my left eye to remove a cataract caused by T1D and 4 weeks later the right eye had to be dealt with. I suffered severe insulin neuritis after being diagnosed and after having my sugars normalized. My specialist has confirmed that I have permanent nerve damage in my feet and each and every day I reminded of this when they burn and go numb. I certainly get upset when people are shocked and say things like "but you take such good care of yourself, your A1C is amazing". I want to yell and scream that this is Diabetes and sometimes these things are luck of the draw. Also no one deserves to suffer complications, no one.

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    1. Oh, Jocelyn, I'm heartbroken for what you suffer with. I'm sorry. Yell and scream all you like.

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  13. I am 100 percent guilty of saying something like 'they did not have the tools we have today." and what i mean by that is really, complications are WAY less possible than they were years ago. It's fact. Do they still happen? Criminy -- my daughter was on kidney meds for three years. Of course they can -- but we have ways to fight them (like laser surgery). I guess in my mind guilt or blame is nowhere to be found when I say those things. No one does anything "wrong" to get them ... but it sure is easier knowing what your blood sugar is compared to not long ago when no one did. I'm sorry if I ever offended you but that was never the intent. And when I see newbie parents asking if their child's aching foot could be the start of complications, I feel i must tell them that times have changed for the better. My daughter's adult endo tells her that every time she sees him. Again -- I am sorry if it sounds offensive. I have never said "You only get complications if you are not a 'good diabetic' rather I say the tools today make it rarer than it was in the past. Thank you for your insight. I'm going to change the way I state this from now on.

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    1. I came back to finally read the whole post but I'm lingering on this. Thanks for this, Moira!

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  14. Thank you Mel, for writing this..

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  16. Thank you for writing this amazing post! 35 years with diabetes and I'm doing my best - And sometimes the judgement and assumptions are overwhelming & infuriating!

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  17. You're right -- it seems like complications have been a very taboo subject in diabetes discussions. I particularly notice that the media and advertisements always show really healthy and athletic diabetics doing things that a lot of non-diabetics couldn't do either, like bicycling or rock climbing, which lead to the false impression that diabetes doesn't affect their lives much at all. Or else they show older, but not elderly people looking hale and hearty, taking a walk or enjoying time with their grandchildren.

    While I do understand that diabetics don't want to be discriminated against, and want the same things out of life as everyone else, I do object to the portrayal of us as "just like everyone else" when the truth is that we're not. Nat Strand would NEVER have won that race without her very vigilant and helpful partner. Life with diabetes is NOT a walk in the park, and those strong, beautiful and healthy looking people do NOT represent everyone struggling with the disease.

    So I feel that there needs to be a balance in media and advertising representation of people with diabetes. Even in Diabetes Forecast, they tend to showcase only the young, strong and beautiful. Or occasionally, slightly older, a little bit fatter but still beautiful and "successful" diabetics. I think we need to be a LOT more honest about educating the world that diabetes is NOT a picnic, NOT easy, and NOT without risks for anyone who has it. Thanks for the article, and thanks for bringing up this touchy subject!

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  18. It's awfully tricky. While no one wants to use the words blame or fault (and understandably so) we also want to believe that we have some control of our health destinies. This extends beyond diabetes too. Everyone has heard stories of the grandfather who ate bacon every morning and smoked unfiltered cigarettes into his 80s without health problems. And those people exist, just like people who ignored their diabetes lived largely complication-free lives for decades. And on the other side we have people experiencing neuropathy after only a few years, and marathoners dropping dead of heart attacks in their 40s. At the end of the day, there's no formula for who will and won't experience complications, and more variables at play than we can begin to understand, but I think the underlying premise- that the closer we keep our blood sugars to those of people without diabetes, the more our risk profile should resemble theirs, all else being equal (which it never is)- is a reasonable one.

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  19. Thank you for sharing. I've had a rough week with keeping things on track and really been wanting to throw in the towel and say screw it all! I dint want to do this anymore, but I know I don't have a choice and don't want to give T1D an inch. Read this at the perfect time.

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  20. Awesome post. I find myself making the same points endlessly to little avail, but this puts it beautifully.

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  21. Melissa, thanks for your thoughtful post. I'm lucky in that over 22 years with diabetes, my complications are minor. I've been guilty of ignoring the inconvenient truths. Sometimes we don't want to talk about what makes us uncomfortable. But maybe that's why we should talk about those things. Thanks

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  22. A lovely post. My personal approach to diabetes is to do what I can to minimize the risk but without sacrificing living. I don't want to go through my life with the "fear" of complications hanging over my head like Damocles' Sword. It's a difficult balancing act.

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  23. thank you, as someone who was dx with cataracts and had two eye surgeries at 15, only six months after a t1d dx... this is something I needed to hear.

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  24. I want to live in Leading Cause of Nothing land for a while longer. I loved reading that sentence and am avoiding the heartbreak of the critique/reality by only skimming it.

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  25. I can't thank you enough for this post. I've never read your blog before, but saw a link, and I'm tearing up. I have severe gastroparesis, diagnosed just 10 years after mostly moderately well controlled type 1. This whole "high blood sugar complications" is alienating and shameful. I work hard to not beat myself up about getting an awful condition, and it is even harder when I see people in my very own community using such shaming and painful language. As a social worker in the field, I want to work to amend this destructive trend of language. Thank you.

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  26. Thanks for writing this one - it says so many things I've not been able to put words to.

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  27. I have read all the posts and tried to understand the feelings expressed..

    I was diagnosed 56 years ago at age 22. I lived in a different era; one could say different culture than we have today . We managed with whatever we were dealt. People cared and felt badly for those with physical disabilities and those who suffered chronic disease as I suspect they do today. However, we would simply asked how one another were. Politeness was considered to be the way to act.
    I imagine that people had negative thoughts and wanted to know more information but it was not polite to ask or bring up the subject unless close friends or family.

    I have a few mild complications but none of them have stopped me from doing what I wanted to do! I am slowed down sometimes working out a new control pattern as I age but - that's life. I have never felt guilt, or sorrow or anger or been depressed because I have Type 1 diabetes.

    I awake every morning and say Thank you, God for another beautiful day, for my son and daughter now grown adults and healthy, and for my husband of 57 years. What more could I ask?

    Think positive as often as possible

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  28. Asdjfaolirgvhaw;eoljugba;rzedofgzusdr, can't cry at work! Can't cry at work!!!! This is such a great post. I worry about complications all the time. Literally all the time. They terrify me, because being sick is scary, and also because I never want to be labeled as "bad at diabetes" when I've been pouring my heart and soul into taking care of myself as best as I can. I need to internalize the idea that I AM doing my best, and nobody DESERVES a turn for the worse.

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  29. Asdjfaolirgvhaw;eoljugba;rzedofgzusdr, can't cry at work! Can't cry at work!!!! This is such a great post. I worry about complications all the time. Literally all the time. They terrify me, because being sick is scary, and also because I never want to be labeled as "bad at diabetes" when I've been pouring my heart and soul into taking care of myself as best as I can. I need to internalize the idea that I AM doing my best, and nobody DESERVES a turn for the worse.

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  30. Most of the time I'm still in denial. I take excellent care of myself and Evil Barbie tells me I'm a model patient. But I have eye issues and other stuff starting to creep up on me. My A1C is 6.1. Makes me mad as hell.

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  31. What a great post! I have always felt the exact same way! I'm in my 30's (and have T1 Diabetes) and am dealing with kidney failure and heart disease, while I watch my coworkers of the same age, with T1 Diabetes also, having babies and living relatively complication free! I hate the thought that they, or anyone else in society, might think of me as a "bad diabetic". Sure, I haven't had perfect control, but who does?? All we can do is march on one day at a time with our heads held high knowing we're doing the best we can. I empathize with anyone else who is dealing with complications, and celebrate those who aren't... we're all in this together! We've got to support and not insult.

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  32. Thank you, Melissa, for bravely talking about this. It struck so many chords in my heart and soul.

    This post has helped many people open up about their lives with diabetes and the fear and worry we all carry.

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  33. Holy tears streaming down my face, batman.
    There are so many emotions I'm feeling now after reading this. You are spot on for so many PWDs and this topic needs to be less taboo. Thank you for taking (one of) the first steps.

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