There is so much I despise about the internet that sometimes it is hard to settle on a top 10. But high on the list will have to be top 10 lists themselves, especially those devoted to listing things you are doing or saying wrong in your daily life and “didn’t even know it” until some pious asshat decided to school you. The chronically ill have plenty of lists of our own, apparently designed to prevent you from committing grievous insult. This is not surprising to me: we often have relatively few social encounters during a given day and plenty of insomniac hours at night to mull over them and add them to the store of our aches and pains. But in my case, at least, I am giving everyone a free pass: say anything.
High on most of the aforementioned lists created by my colleagues-in-infirmity is the apparently outrageous insult of being told “you don’t look sick.” Given that I feel like a the inside of an incontinent zombie’s underpants, I find it hard to be offended if someone tells me that I look in anyway better than I feel. Apparently I am unique in this regard, so don’t go trying it on all your chronically-ill friends, but you want to tell me I’m looking good, please don’t think twice.
Here are some others apparently noxious to my kindred: “I know how you feel”; “Have you tried X?”; “My sister/brother/friend had something like you and did X and now they are cured”; “Are you getting enough exercise?”; “At least it’s not fatal…”
You know what? You can say any of those things to me. Seriously. I will interpret them as well-meaning attempts to forge connections across the epistemological gulf illness brings into sharp relief. If I ever reply testily, it is only because I am tired or in pain—and because I did try X and it did not work despite my deepest wishes that it would; or because I so very much miss being able exercise. But you did not know that. You were trying to reach out, which remains (despite the internet’s attempts to slap us down every time we do so) the most precious gift we can give each other. Living, as the chronically ill do, in a fog of isolation with a body and mind that are no longer communicating properly even to each other, it may be true that I don’t always have the words or the arm strength to reach back in turn. But that makes your gift all the more meaningful and powerful, however you package it in words.
At least as far as I am concerned, ignore those lists on the internet that tell you what not to say to someone suffering from chronic or invisible illness. Because if you are so worried about saying the wrong thing, it will inevitably become easier to say nothing. And that would be the #1 worst thing to say of them all.
Jared Gardner is a professor and patient at the Ohio State University.