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Guest Post: Walking the Type 1 Tightrope.

Thanks to the move we have on tap for tomorrow and the fact that we're up to our eyeballs in packing tape and cardboard boxes (and also that we've accidentally packed Siah into three boxes now ... that cat had better be careful or she'll end up in the moving van), now is a great time for a guest post from a fellow diabetes blogger. 

This morning's post comes from Jacquie of Typical Type 1, and I'm very honored to be sharing her writing talent here on SUM!

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JacquieI swear I wasn't trying to get out of jury duty.

See, I was in the juror pool, answering questions about my job, my home ownership status and the last parking ticket I'd received, when the judge asked one question of all of us: "Is there anything we should know about that may impede your ability to serve as a juror in this trial?"

Sheepishly, I raised my hand. "I have Type 1 diabetes," I admitted. "It's not a huge deal, but there may be a few minutes when I'm not able to pay complete attention. I may have to eat something in the middle of the trial."

For a second, no one said anything. Then the judge spoke up: "Hundreds of thousands of Americans have diabetes, and they're able to perform everyday tasks like jury duty. If you need to eat, just let us know, and we'll take a recess."

I nodded, and accepted my fate as a diabetic juror. (Also, I felt like kind of a dumb ass for even saying anything.) While I sat there and listened to the details of the trial and the life stories of my fellow jurors, the weird familiarity of the situation started to sink in. Of course I know that hundreds of thousands of Americans live with diabetes, Your Honor. Of course we're all able to perform everyday tasks with relative ease. Of course I'm a normal person – except for the times when I'm not. Sometimes I have to excuse myself from a meeting or a bridal shower to shotgun a juice box. Sometimes I wear a mechanical pancreas in my cleavage. Sometimes I say things on the phone with insurance company customer service representatives that I would never say to a person in real life. But I'd be darned if some innocent citizen was going to go to jail because I'd miscalculated my breakfast bolus and spaced out on the defense's arguments.

This was a perfect example of the proverbial tightrope we all walk as people with diabetes. Lean too far to one side, and you're Sick. Fragile. Old before your time. Wilford Brimley's biggest fan, with a collection of pill organizers and sad story to tell anyone who asks you how your day is going. Teeter too far to the other side, and your friends, family members and co-workers begin to believe that your diabetes is no big deal, after all. They'll become convinced that your insulin pump does all the work for you, that diabetes is no more of an inconvenience than the task of flossing, that maybe if you just exercised more or laid off the Cinnamon Toast Crunch, your health problems would effectively disappear.

Before I started wearing my pump – and way before I started connecting with others in the diabetes online community – I treated my disease as an accessory. I wasn't embarrassed about it, but I wasn't exactly forthcoming, either. I gave myself injections in cars and at dinner tables the way other people apply lipstick. I kept up with everything, but I didn't obsess over it. Every once in a while, a roommate would complain about my trail of test strips, or someone would shoot me a look while I tested in public, and I would retreat into a more secretive or jocular mode, shrugging off diabetes like it was a case of the sniffles or pesky rash.
Now that I'm in my thirties, I feel like it's a tougher performance than ever. I don't want anyone to assume that I need to eat lunch just because it's noon, but I also want people to know that when I need to take a break from normal life to treat a low, I'm not screwing around. I really do feel like crap, and I really am in a potentially scary situation. Forty-five minutes later, however, I feel as average as they come. (Assuming I haven't overtreated, of course, but that's an entirely different kettle of Swedish Fish.)

I suppose the balance between "sick” and "normal" is just as difficult to achieve as a consistent blood sugar level that's not too high or too low. The story of Type 1 diabetes – and how any person lives with a chronic illness – is a complicated and nuanced one, and it takes decades to tell.

Am I a healthy person who happens to have diabetes, or a diabetic person who happens to have a pretty healthy life? For this girl, the jury's still out.

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Thanks, Jacquie!  And for you guys, what's your take on that last bit?  Are you a healthy person who has diabetes, or a diabetic person who has their health?  

Comments

For my child, it's 100% that he's a healthy child who just happens to have diabetes. His pancreas is broken, it doesn't mean he's sick. But that tight rope is such a good analogy, I wish there was balance. I'm off to take my child's items to school today. I have to walk that tightrope - convince the teachers that he's sick enough that we need to take this seriously and then convince them at the same time that he's not sick at all and should be treated like everyone else.

We are both, many of us, though lots of people are diabetic and don't have their health so they might be neither. For me the more I think of diabetes as a condition and the less a "sickness" the better. And the judge should've said millions, not hundreds of thousands! Great post. Thank you.

Healthy person who has diabetes. I'm, for the most part, in good overall health (knock on wood that it stays that way), except for the fact my pancreas doesn't work the way it should.

This hit me the other week when I was registering Chris and myself as parishioners at our new church. One field was for Health, and the three choices were 1) Healthy, 2) Sick or Ill, 3) Disabled. I put Healthy. I don't consider myself "sick," although other people may.

Like Michelle in the previous comment, I consider my 7 year-old son Joe "Healthy who just happens to have diabetes". I totally relate to the comment about the pump and people thinking that it does all of the work for you...it is a constant tightrope...I actually use the analogy of rollerblading on a mountain ridge, but it all means the same: BALANCE. Sorry that you ended up doing the jury duty...that does kind of suck.

"Of course I'm a normal person – except for the times when I'm not."

Love that line.

Very well- written Jacquie, as usual. :)

Awesome post! It describes a condundrum that I often find myself trying to solve... but after many years of not even going near the word "diabetic" because I was afraid it would "define" me, I realized, you know, being a diabetic isn't so bad, and in the end I like to think that being a healthy person who has diabetes or a person with diabetes who happens to be healthy means exactly the same thing, that I am a person, a diabetic and I'm healthy (heck, I'm a wife, mother, sister, daughter, and lawyer, too), but I have the added bonus of getting to know all of you wonderful people because of that whole diabetic thing :)

It's definitely a difficult balance, and one that I'm nowhere near perfecting yet...

As for the question of, "Are you a healthy person who has diabetes, or a diabetic person who has their health," the WHY behind my answer may be a little different than most. I think I'm a diabetic who lives a healthy life, because I truly think I am healthier for having been diagnosed with T1 diabetes. While my primary focus is working all of this new diabetes stuff into my life in general, I'm already starting to make an effort to live better overall. I've taken a less stressful job, I've been eating well, and I'm starting to work exercise into my life. I also went to counseling to deal with my diagnosis, but discovered other areas of my life that needed just as much attention. I can't say for sure that I would have done any of this if I hadn't developed a chronic disease. So, I currently feel like the health followed the diabetes, rather than the diabetes being a footnote to my health.

Healthy person who happens to have diabetes.

(And love love love Jacquie, what a great new-ish voice in the online community.)

So true! We walk that fine line every day, which often leads to "overexplaining mode" in which you feel everyone should know everything about what it means to live with diabetes...and then you realize they tuned you out after "type 1 diabetes is an auto immune disease..."

Fantastic post! These were my exact thoughts when I was recently visiting family, how much to brush off any concern from others or how much to make it clear that this is a serious issue in my life. When something is the first thing you think about upon waking and the last thing you think about before falling asleep, I think that means it's pretty serious.

I tend to think of myself as a healthy person with diabetes. Still, I think it can only make sense in my head, my relationship with my disease and what exactly it means for my life.

I like your style Jacquie. You really add a nice touch of normalcy with your real world thoughts. That is our number one goal, eh? To be normal? !!!

Outstanding post, for sure! Now, my mind is mulling that interesting question. Think I've got a hung jury, though. See both equally and can make args for and against each one. Overall, I hope for both! Thanks for the great story, Jacquie. Oh, and by the way: did you end up getting selected for the jury?

Wonderful post!! It is so hard to walk this tightrope everyday. You don't want to come across as too serious but sometimes it is serious and you need help. It is a difficult balancing act.

I always mark "healthy" on questionnaires, as I feel I am a healthy person who is diabetic. However, I can completely relate to Jacquie's situation. The closest people around me get used to me checking my sugars, popping glucose, my Dexcom beeping, etc., and don't usually think twice about it, because it is so routine for me. I find I have to tell my husband that "I really feel this one," so that he can help out more than usual. However, like someone else previously posted, I am probably healthier because of my diagnosis...

so that doesn't work, huh? damn. can someone remind me what diabetes is good for again?
I always say that diabetes is the best thing that's ever happened to my health. without it, i really wouldn't pay much attention, and I'd do a lot more things to my body that I know it would prefer that I didn't. That said, there are certain things that you can't get over. Cuts/wounds take a lot longer to heal than ever before, even if I am 100% in range. Some days just don't feel good, no matter what. I think I have to fall on the side of diabetic person who [for now] has their health.

When I was in the E.R. being diagnosed with diabetes, everyone kept saying "You're in very good health." It took a bit of mental gymnastics to figure out that I could have diabetes and not be sick. Now it's, as you say, a balance.

Two months after I was diagnosed I was called for jury duty. I was going low almost everyday before lunch, and I wasn't at all sure what I was going to say if I was potentially impaneled. But it was moot, since I wasn't picked.

Whew, it's a toss up some days. Some days I feel perfectly normal (even if my sugars are a little wonky that day), then there are some days where I just feel sick all day and my sugars are swinging all over the place. I was diagnosed at age 20, so I know what it was like to truly feel normal. I like to think of my diabetes as "dormant" as in, if I try my best, this beast usually behaves. But some days it's not dormant and I feel like crap and I feel like I have a disease. Am I making sense? I dunno. But yeah, jury is still out for me too. I think I teeter on both.

I would not call myself a healthy person. Needing a word to distinguish between the (minority) of times when diabetes is all that's going on with my health and the (most of the) time when other things are going on, I have been using a neologism:
Healthyish. I'm a healthyish diabetic.

I DID end up getting chosen for jury duty, as a matter of fact!

And I actually had a lot of fun. It was a felony driving without a license case or something. We got a ridiculous amount of breaks, and you couldn't go 3 minutes without a judge telling you how grateful he or she was for your service.

Dude was guilty, by the way.

I've spent most of my very-nearly 20 years living with the bigD fully believing that I'm a healthy person with a slacker pancreas. But, I'm starting to question that. Taking that position allows everyone around me to ignore the extra effort I put into living my "normal" life. Usually I'm ok with that, but there are days when I could use a tiny bit of extra slack. And I am starting to wonder if we're still "10 years" from a cure because we make living with diabetes look like such a little deal. If it looked harder to the world, would they work harder to heal us?

Most of the time I am a healthy person who happens to have diabetes. But sometimes I am diabetic who works very hard for her health and needs to be validated.

I've had diabetes for 40 years so I pretty much answer to anything...

You had me at Swedish Fish.

I don't think I am healthy. I think I am a diabetic and my health is an issue. Not the other way around. It's just how I roll. ;)

I think I'm both. On days when I'm battling numbers all day I'm the latter. On a good numbers day I'm the healthy person. I'm a lot of other things too fortunately - brunette, project manager, friend and so on and so on...

I have been a Type I Diabetic for 32 years. I am legally Disabled. I have moments of the day I feel 99% NORMAL, and others- very sick... and, I have low energies, and diabetic brain fog, etc. By I keep on swimming....

I think you are a strong person who works hard to be healthy while living with a chronic illness. And don't forget to be proud of all the hard work you do to stay healthy!!

And Kerri, yay for the move - although moving itself is a drag I bet it will be worth it in the end. :)

Great post! It's easy for us to get caught up in how 'special' our diabetic concerns are.

Keep in mind that there will be a juror who...

has terrible indigestion and can't pay attention because they are too concerned that everyone else is hearing their stomach noises.

or

is anticipating popping the question, or breaking up with a significant other after dinner that night.

or

is just plain bored, tired, distracted for any number of reasons!

In life as in diabetes, perfection is a nice idea, but don't let it get in the way of normal living!

I think I'm a Type I diabetic who is pretty healthy despite her diagnosis more than 38 years ago. I did get myself excused from jury duty a few years ago, before my pump. My endo. said we do not have to do jury duty. Now that I wear a pump, I still wonder what would happen if, say, I realized that an infusion set had gone bad during a trial, and my BG's were skyrocketing. That's why I'd rather NOT do jury duty. You may change your mind about all of this, too, when you get into your 50's. In my 30's, I thought I was invincible!

Thanks for your post, Jacquie! I had a very similar situation when I went for jury duty recently. In my situation they actually had us go up and speak to the judge in private. I told him that I didn't think that it would be an issue but I have diabetes and I may need to test/eat if my blood sugar was high/low etc. He said that would be no problem and I could just notify him if I needed to do so. I thought that was pretty reasonable, although another (type 2) potential juror was absolutely appalled that he said the same thing to her (mainly I think she was searching for any way to get out of it!). I ultimately did not get picked for the jury...

And in regards to the last question... Of course I am a healthy person who happens to have diabetes. I could be healthier if I exercised more.... but that has nothing to do with my diabetes... more with my lack of motivation to get off my behind!

Thanks again for the great post.

I didn't realize how healthy I was until about 9 years ago when I was at the dinner table with my husband. I was pregnant at the time and he was telling me what a healthy person I was. I didn't understand at all. In my book, if you had diabetes and didn't exercise regularly, you weren't healthy. But my wonderful husband pointed out to me that I took such good care of myself, I am a vegetarian, and I had already given birth to a set of healthy, full-term twins. Through his eyes, I was able to change the way I saw myself. 

I've always considered living with diabetes much more of an art than a science. (Although it's been my experience that most endocrinologists would have you believing it's a science.) To me, it's always felt like flying by the seat of my pants. 

As I get older (I was diagnosed 34 years ago), when something goes wrong with my health, I find myself thinking, hey, you've been lucky so far, is this where your luck turns sour, the beginning of a downward slide?

So I'm still healthy, thank goodness, and working to stay that way! As an older mom, I intend to stick around for a looooong time!


P.S. I know jury duty can be an inconvenience and a disruption, but please don't forget how lucky we are to have this system of justice. Think of the many horrible alternatives. Amen to speaking up for your needs, though!

Suki --

I ultimately was chosen for jury duty, and I loved it! It was just a day, but I thought it was really interesting and fun.

June --

I never for a moment consider myself invincible. I don't think anyone with diabetes does -- not even the kids and teenagers who live with it. I'm looking forward to the next however-many-years (hopefully decades), and don't plan on turning down any civic duties (or random extracurricular activities) any time soon!

I'm a happy person who has diabetes. Lol the jury is still out:)

I agree, I often find myself wondering if I'm either making too much of a fuss, or not treating diabetes seriously enough. It's about finding a happy middle ground where you can live your life, but still be nice and healthy :) Great post!

p.s love your new profile pic! You're looking stunning :)

LOVED this blog. So true. Just shared it on facebook! Thanks for posting!

Great post Jacquie! Thank you for sharing your awesome writing with everyone here!

And Kerri - excellent choice.

I was reading this and thinking "it's like I wrote this!" Everything she said is SO true - trying to maintain that balance of "I'm normal, don't treat me differently!" while still making sure people know the seriousness of the disease is SO hard...you don't want to be thought of as different, but deep down, you know that you are ARE different and there are going to be times when that becomes much more obvious. It's nice to hear people speak in a way that is so similar to how so many of us feel. Great great post!

You don't know how appropriate this was to my life today. I needed this one! I had that overwhelming feeling of no one understands how I'm feeling and especially paragraph 5 & 6 about what people assume about how diabetes affects your life...they think well how can you feel like total crap one minute and 30 mins later feel completely fine? I felt so alone today at work when my sugar plummeted and I panicked thinking do I have time to explain why I need to leave this meeting to grab an OJ and will they know how dire it was or will they just think I'm being dramatic? Thank you!!

I vote for "healthy person who happens to have diabetes." I was told not to let my diabetes define me when I was diagnosed... But that's hard to believe sometimes when it is so consuming of my time, thoughts, energy and worry... :-P

Great post! I have a pacemaker and am in my 30s, and can't go through metal detectors, so I know what you mean about jury duty (I never made it into the building). I really like what you said about walking the tightrope of not being "sick" but also not being "easy" either.

Melissa

"Are you a healthy person who has diabetes, or a diabetic person who has their health?"

Darned if I have figured that one out yet.

Thank you Jacquie. I'm a mom of a 15 y/o son with a ten year history of type 1. He feels, and I totally agree, and try to emmulate in front of him, that he IS a healthy person living with a chronic condition. There is still that part of me though, especially at the beginning of every school year, that dreads when I tactfully and respectfully try to let his new teachers and coaches know what "could" happen while still trying to respect my son's feelings. I also hope that my attempts at educating the staff results in their understanding that he IS a healthy, "normal" kid but that he does walk a tightrope and occasionally needs immediate intervention to climb back up...and hope that they listened and learned.

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