It seems wrong, of course, to set “healthy” and “human” in opposition to each other, but chronic illness makes you look at the world in weird ways.
With diabetes, you might expect to find a positive relationship between good care and happiness–and to some extent there is–but at the same time, it isn’t so simple. Sometimes, taking care of yourself is mentally taxing, and comes with certain costs.
To tell you what I mean, I’ll have to tell you about having Type 1. The disease is a sinister thing that creeps in to alter every move you make, no matter how mundane. You wake up…
Actually, halt right there: it matters when you wake up, because the cocktail of hormones that your body releases in the morning messes with your blood sugar considerably. Sleep does crazy stuff to the endocrine system, so this becomes the first of many daily choices in which diabetes leans over your shoulder and breathes heavily in your ear. “When should I wake up?”
If your sleep schedule becomes irregular, your blood sugar can behave like a crazed dolphin, diving and leaping, diving and leaping. You must acknowledge this every time you want go out at night with your friends, watch a late sports game, or stay up with the brother that you don’t get to see enough.
In many cases, what the Ideal Diabetic wants to do clashes with what your human self would like to do.
Each time you consider your options, you’re excruciatingly aware of what an ideal diabetic would do. They would create a strict sleep schedule and stick to it. You’re so aware of that lurking persona that it becomes a full-on character: The Ideal Diabetic, or TID. In many cases, what this character wants to do clashes with what your human self would like to do.
Keeping this tension in mind, let’s continue our tour of a diabetic’s day. When it’s time for breakfast, stay vigilant: too many carbs will make your blood sugar scrape the sky, and you’ll feel sick. It can take hours and hours to pull yourself back down. This will damage your focus and productivity. (The Ideal Diabetic probably wouldn’t eat carbs in the morning.) You must push through it.
Say your job on this particular day consists of writing an article. This task (before, during, and after completion) will affect your biochemistry–perhaps dramatically. (My blood sugar is rising as I write this, probably as a response to the mild anxiety and excitement of writing.) You can never fully enter “the zone” and concentrate 100% on writing, because you must pay attention to your illness.
If you want a beer when you come home, have it, but keep a close eye on your sugar level. The diabetic body reacts strangely to alcohol: your blood glucose rises, crests (this can be nauseating); and crashes (this can be dangerous: The Ideal Diabetic wouldn’t drink).
Quotidian choices provoke a flurry of mental activity. Say you want to take a spontaneous weekend hiking trip. This is difficult, and your brain scrambles, “Can I do this? Do I have sugar handy? Will my companions know what to do if something goes wrong? How far will we stray from the nearest hospital?” The Ideal Diabetic would have planned the trip ahead of time.
Carry all of this knowledge with you. Stay up late to chat with a friend, but you’ll relinquish control of your blood sugar. Have a beer, but you’ll suffer doubly. Go on a spontaneous hike, but you could be chugging sprite and heading back towards the car after half an hour.
Above all, decide. Weigh these things in your mind: minor pleasure, minor suffering, your future death. Decide. Decide.
You see where I’m going with this. Diabetes–and I assume it has this in common with other chronic illnesses–makes you live inside a mandatory pleasure-pain calculus.
Here’s the problem: being the Ideal Diabetic becomes dehumanizing after a while. Vigilantly policing your disease allows it, in some small sense, to rule you. Each decision you make in favor of TID, even if you hardly notice it after a while, takes a small toll. Eventually those decisions conglomerate into something fairly heavy that you carry around with you.
Spontaneity, flexibility, and indulgence in small daily pleasures: all of these things contribute to feeling human. The Ideal Diabetic would have to curtail these elements of his behavior, and so, I’d contend, he wouldn’t be, in the fullest sense, human.
Spontaneity, flexibility, and indulgence in small daily pleasures: all of these things contribute to feeling human.
So again, the problem might be stated this way: do you want to feel healthy, or feel human?
It might be frivolous to try extracting a lesson from all this, but any order, even artificial order, stretched over experience, makes it easier to wake up each day and do the same stuff. With this in mind, what I’ve decided to believe is that self-care ought to privilege the self, and not the disease.
It seems obvious that becoming The Ideal Diabetic wouldn’t be worth it. Planning your days rigorously and keeping a hawkish eye on your bloods sugar might allow you to stash away a few more years of life (who knows?), but wouldn’t that life be a little more sterile, a little more defined by illness?
Perhaps it’s good to remain a little anxious–I’m not trying to argue for any kind of lax posture toward the disease–but that anxiety should remain a tool, a whetstone for your medical vigilance, not something that motivates you. Staying up late shouldn’t provoke undue anxiety, and having a beer with friends shouldn’t scramble your brains with guilt.
I try to tell myself that it’s okay to compromise. It’s okay to take a hike, eat a big bowl of spaghetti, or play basketball for three hours, as long as you don’t forget your diabetes completely.
Maybe I’m wrong. Maybe it’s better to make everything secondary to one’s self-care, and haggle for those extra years. I’m not sure.
What I’m sure about is this: there’s a psychological element in one’s struggle with a chronic illness, and sometimes the brain needs to rest. It’s better to avoid injecting every decision–about what you eat, when you wake up, where you go–with a sense of moral crisis. You can never pretend you don’t live inside the pleasure-pain calculus, but you can put down the calculator and try to enjoy yourself.