Since I surround myself with people who know better, no one’s yet given me the dreaded words You don’t look sick. Even people who do look sick often don’t look as bad as they feel*. As Jen Fulwiler explained it last year:
I feel self-conscious that I’ve been doing better, and have no visible symptoms of being ill. . . . I worry that the folks dropping off the food are starting to suspect this is some kind of scam. The other day a super sweet lady from the parish came by with a steaming gourmet dinner for our entire family, complete with appetizers and dessert. I had just gotten back from a doctor’s appointment so I was dressed up and wearing makeup; I’d been resting most of the day so I was unusually energetic. She seemed tired from having worked so hard to cook for our entire family in addition to her own, and I used my Neurotic ESP to determine that she was wondering why I wasn’t cooking for her.
I told Joe that I should get some crutches for when I answer the door for people delivering meals, as a symbolic gesture to assure them that their efforts were not wasted. He looked at me like I was insane, and pointed out the obvious fact that my problem is with my lungs and that I would have no use for crutches under any circumstances. I said that I know, but they sell them at the grocery store, and I didn’t know where to get my hands on a ventilator — and, again, it’s all for symbolism anyway. He backed away from me slowly and went to pour himself a large glass of wine.
Yes. This. I put a short section in my catechist book on invisible disabilities, because it’s something that comes up in religious ed more often than you’d think. Mostly among catechists, but among students as well. That one chapter is the one I get the most thank you letters about.
You can be seriously ill without being 100% incapacitated.
It’s pretty rare for someone to be completely felled in a single blow. This causes confusion, because you see people wandering WalMart who look like they’re going to collapse any second now. So if your sick person still has good balance and coordination, and manages to answer the phone in a cheerful manner, you think, “Must not be that sick. There are people at WalMart who look much, much worse.”
The people at WalMart might be worse. But that doesn’t cause the sick person to be less sick.
Some people are good at putting on.
I knew a lady once who would answer the phone cheerfully even if you woke her up at 4AM. It wasn’t that she wanted you to call then. She just had excessively good phone manners. And thus the Perceived Illness Paradox: Some people complain a lot, other people don’t. Some people are good at masking their symptoms, other people aren’t. Some people are good at coming up with clever work-arounds that keep them high-functioning, other people aren’t. You really can’t judge how someone feels inside by how they’re acting outside.
Rest makes a difference.
Anyone who races knows you manage your training schedule so that you peak when it counts. There are days when you can ride hard and fast, no problem, and days when you can’t. Depends on how much sleep you got. What you did the day before. What you did the week before.
Illness doesn’t change that, it just changes the scale.
Figuring out an unpredictable body is exhausting.
Normal people spend most of their time operating well within the margins of their abilities. If you knew you had to ride 100 miles on your bike sometime soon, you’d have to plan ahead to make sure you could do it. You’d strategize how to make it happen with as little trouble as possible. But you wouldn’t feel the least bit of guilt if you misjudged: “Wow, that was easier than I thought it would be, why did I make such a big deal out of it?” Or conversely, “I knew it would be hard, but I didn’t realize how hard!”
Sick people have to figure out the 100-mile ride about everything they do . . . and then get in trouble if they misjudge. “Why’d you spend half an hour answering e-mails? You should have rested up so you could talk to your mother on the phone!” Or “Why’d you put off that phone call, look, you talked for twenty minutes, no problem!”
It’ll make you bonkers. You hear the mail truck go by, and you think to yourself, “Should I walk to the mailbox? Or get a kid to do it for me? What’s the best thing here? How will this decision impact my family life?”
What you like is easier than what you don’t like.
Sick people are confusing because their gifts don’t go away. Okay, if your gift is watching football on TV, everyone will think, “Look he spends all day watching football games, he must be sick.” But what is hard for you is effortless for someone else. What is easy — even fun — for you is difficult for someone else. It’s not about the sheer physical energy required. It’s the mental energy.
So my son might say to my daughter, “I see you have plenty of time for scrapbooking. Why don’t you research computer components? What’s wrong with you? Just lazy, I see.” And she’d point out to him that he received a photo album for Christmas, and he’s supposed to put his photos in it. He had time to build a computer, and even more time for playing computer games . . . why so lazy with the photo album?
There’s service to your fellow man, and then there’s letting your fellow man turn you into his servant. We live in a hyper-critical age. What you wear, what you eat, what your hobbies are, how you spend your money — all of it is subject to the approval of seven billion self-appointed guardians. That doesn’t change when you’re sick, it just becomes harder to please the seven billion, because you’ve got less to please them with.
Normal people might say, for example, “Is it worth it for me to give up an hour of my time to visit my crotchety uncle who invited me for dinner tonight?” When you’re sick the question becomes, “Is it worth it for me to set aside an entire afternoon to rest, and give up getting any chores done, at all, the entire day, so that I can physically pull off the feat of visiting my uncle for an hour?”
In normal life, a dysfunctional friend is the one who makes inordinate demands on your time and energy. In sick life, everything is an inordinate demand. But some of those demands are very gratifying, so you organize your life to make them possible. The chief sin of sick people, I suspect, is in gratifying too many whims.
Order in all things.
Sick people are confusing because of the scale change. With so little room for covering-over, it becomes obvious what the sick person values most. It becomes obvious where the conflicts lie, because there’s no margin where you can quick slip in a nod towards other people’s priorities. As in academia, the rivalries can be so bitter because the stakes are so small. “Just a few minutes of your time” is now also, “all your time”. How are you going to spend all that time? The way you want? The way I want? Something in between?
*Sometimes things look so bad that you assume the other way, “It’s not as bad as it looks, I hope?” To which I’ll observe: A badly scraped knee looks horrible. But it feels even worse.