Manners and illness seldom glide gracefully along together. It didn’t strike me then. Not while I was on my hands and knees, trembling, inches above the shredded bark filler of the landscaping in a parking lot outside of a hospital. I’d just had a test, and I wasn’t reacting well to the three days without anti-nausea meds required for it. I’d just lost my third attempt to drink water. I was desperate.
So was my driver, who was standing nearby, but for different reasons.
A truck, I think – something large, not an ambulance – pulled up next to us. “Is she all right?” the driver asked. And my driver – the person I was trusting to call it if I was in too bad of shape to call 911 myself, to take me into the ER, to do something – that person said, in tones of great embarrassment, “she’s fine!”
I was anything but fine. Hours later, I shivered in my bed at home, unable to get warm. The sides of my back hurt. I could barely keep my eyes open. My lips were swollen and cracked, and I could barely manage to swallow. It was hell. But I’d finally managed to keep an antinausea pill down long enough to do some good, and my driver – whom I later learned hated doctor’s offices, hospitals, or anything medical for that matter – was the one who was responsible for forcing fluids down me for hours on end until I was fine.
I survived. I also learned how to do unpleasant, but extremely effective, non-hospital interventions for bad dehydration. Something kept niggling at me, though, over the next several months as I apologized for, well, almost everything. I witnessed the discomfort of those who surrounded me when I was sick, and I realized that we are conditioned to expect certain, largely unspoken but fairly rigid, societal rules of etiquette to be followed. There’s a lot of regional varieties to manners, like apples but without the pleasure of still being acceptable once you’ve made sauce of them. Here’s a few from where I live now:
- Never chew with your mouth open. …Except when you can barely breathe and are simply grateful to be eating on your own!
- Always try some of every food …Except when you have food allergies.
- Clean your plate…Except when GI problems strike and you can’t possibly eat a large amount of any food, let alone whatever mystery meat ended up on your plate.
- Sit up straight, legs crossed at the ankle (for women)…Except when muscle and joint pain and broken bones interfere, or when falling blood pressure drives your body to automatically curl into a ball, clinging to consciousness even when it’s a misery.
- Let older people sit down first …Except when you’re unfortunate enough to be younger and have an invisible illness that means you will be unable to stand.
- Don’t take the elevators – take the stairs, it’s better for the environment…Except when you can’t handle stairs, even if this means taking the elevator at the gym down the one story to the basement pool.
- You are always “fine,” when asked, and you always smile.…Not even going to touch this one.
- No being sick in public…Except when… no, don’t even think about being sick, mate. Ever.
- Don’t make a scene or be dramatic…Except when you have sensory processing disorders, or are absolutely feeling wretched after having received your fifth diagnosis of the week.
- Don’t cancel at the last minute, or be late …Except for when you are chronically ill, in which case you will be doing a lot of last-minute cancellations and strolling into places just a little bit behind schedule.
There’s a lot of rules. Even subtle violations of them cause a cascade of immediate reactions. I often get odd looks as I wait to take an elevator, and those odd looks can turn to glares if I’m not showing the appropriate level of respect for someone older than I by giving up a seat, opening a door, or lending a helping hand with groceries. Rarely, I get rude comments, although unfeeling but offensively-intended remarks are far more common. These are the typical “you’re so skinny, you need to put meat on those bones! Don’t diet! You are too young to be taking that many medications! Well, you have a great personality and are more than your body” statements; they miss the medical reasons or self-respect I might have for myself and are embarrassing but not immediately harmful. It is rare that the embarrassment of my being ill actually leads to real physical danger.
Yet it happens. Someone sick is dismissed as being a “lazy entitled millennial” instead of a chronically ill young human being – and while generationalism is a subject for another post, the rationale is that it is simply bad manners, not a real ailment. A woman is more likely to wait longer than a man for pain relief in an ER – gender differences at play? They cry more, after all; maybe they’re just badly behaved. These things all lead to potential health crises because the underlying societal rules, what even ER doctors and nurses have grown up being subtly instructed in, dictate that when these rules of manners are broken it’s not because something is truly wrong, but because someone is simply out-of-line.
That day, my driver’s instinctual, embarrassed following of the rules of manners nearly had disastrous consequences. But being chronically ill, especially (relatively) invisibly, means that society’s “rules” are going to be broken. For me to accept that I’m not being rude by being ill means recognizing that those “rules” are only guidelines, and that in cases of an emergency these sort of niceties are meant to be broken. In an air emergency, the plane that’s blasting “Mayday!” gets to land first; on the road, ambulances even get to drive on the wrong side! Unfortunately being invisibly ill means that many times those around you aren’t going know that the reason you’re sitting curled in a chair is to battle low blood pressure, or that you’re wearing thin clothes in winter not to be flirty but because your autonomic system doesn’t regulate temperature and you’re burning up. Without the glaring lights of an ambulance as a social cue, no one but me knows just what “emergency” my body is experiencing at that moment.
I’m gradually learning not to apologize, but to gently explain when my breaches of etiquette are caused by my condition. Many understand, learn, and let it go; they’re all right with me sitting while others stand, or enjoying water while they eat food. For some people, being around someone who is that “badly-mannered” is too embarrassing. I’m learning to let them go. For others, adaptations are necessary. If it is too awkward for social eaters to be around me when I can’t eat what they’re having, I find a way to gracefully bow out. The stress of me not eating is psychologically far greater for them than it is for me, but with my food allergies, downing what is available could be life-threatening. I might not have my driver from dehydration day take me to tests again; not only will her phobias make it a horrendous experience for her, but her fall-back to manners and her intense fear could put my life at risk.
It’s not that these people can’t be my friends – it’s that the same accommodations I must make for my own body’s quirks might have to be extended to theirs, too. The Golden Rule of manners is, I suppose, the only one that still applies. Do unto others….and extend compassion.