1) Although our lives are full of doctors and pills, we don’t fully believe in the curative powers of medicine;

2) Sometimes we can be too fatigued to do things like bathe or brush our teeth, although to a well person those things seem to take no effort at all;

3) We may at times wish we were dead, but that doesn’t mean we want to kill ourselves or that we are suicidal. They aren’t the same thing;

4) If we act sick, we are drama queens, basket cases, or worse. If we endure in silence we are closed off and shut down. So we are in a lose-lose place when it comes to telling you how we feel. And since there is no accurate language to describe pain or feeling unwell, we know you won’t understand anyway;

5) We are the best experts on our health conditions, so if we tell you we need a sweater when it’s 86 degrees or that the lighting in Costco causes us vertigo or that the smell of violets nauseates us or that only a certain brand of vanilla ice cream soothes our stomach- it may all be confounding to you, but we come by this knowledge the hard way, so please believe us. (The corollary to this is that, if you are chronically ill and you complain about nonsense or milk your condition for pity when you need other things or make up symptoms to get attention, you delegitimize the rest of us and make it that much harder for us to be taken seriously. So, please, think twice before you decide to go big with a minor annoyance- chronic illness is not a permission slip to be a whiner or to have shoddy communication skills…);

6) Just because we suffer, it does not make us more noble. It just makes us know how to suffer. We don’t have any special life wisdom; we just know a lot about hospital bureaucracy and medical terminology. This can be a very big let-down to non-sick people, so let me apologize on behalf of all of us for disappointing you;

7) We are still people. So it still bothers us if our new medication makes us gain 80 pounds or lose our hair or get bad breath. Yes, we wish we could rise above it in the quest to be well, but really, we struggle- just like you would if it happened to you (see #6);

8) We do have good days and bad days (or better days and worse days), just like anyone else. But that doesn’t mean our illness goes away. It is always in the back of our minds, always governing what we can and can’t do, always waiting to swoop in and steal our fun. So even our good days have a dark shadow in the background. We live with that the best we can, and some of us do a better job than others;

9) When we tell you something you can assume we are honest. Most of us have stories that are counter-intuitive to non-sick people, about hospital mix-ups or drug side effects, or conversations we have had (yes, I did spend 3 hours on the phone with my insurance company). Even if you have to suspend your disbelief, our universe is as real to us as yours is to you. It’s just that the rules are more topsy turvy;

10) We still want to be a part of the world, as much as we are able. So please don’t exclude us or assume we would rather be alone. By default, we spend a lot of our time crashed out, but that doesn’t mean we still don’t want to feel wanted. There is a fair chance we will say no, but that is no reflection on our desire to spend time with you. A lot of the time we just feel cruddy. But please keep trying (on the other hand, please never subject us to a campaign to make us feel better by “getting us out of the house” or any other missionarily zealous thing. If you think your friend is too isolated, go visit. Preferably bring ice cream. If you think your favorite sicky needs more fresh air, forego the outing and ask if you can open a window. Just like you wouldn’t want the sick person to manage your life for you, we probably don’t need you to manage ours. We are sick, not infants. I once had a well-intentioned person defrost an entire freezer’s worth of food for me- on the theory that it would give me just the right push to get up and start cooking. That would have been great if I was suffering from a lack of motivation and not an actual illness. Let’s just say it was a bad move and it wasted a lot of food. It was about a decade ago and it still irritates me when I think about it today. Get the drift?). Anyhow, please keep including us, and don’t take our lack of participation as a gauge of our feelings toward you. As with all things both sick and un-sick, if you are unclear, ask. It’s always better to be safe than confused. Now go forth in clarity🙂