To my friends with chronic illnesses and the people who love them:
You do not have to pretend with me. I don't expect you to smile. You don't need to act like you're okay. I do not love you in spite of your illness; I understand that your illness is a part of you. It does not make you less worthy of friendship, love, or care. I do not question your friendship when you are caring for yourself or for someone else.
If sitting on the couch and watching TV is what you can do, do that. If it takes you a while to respond to me, I'll wait. If you need to leave the party early, you should go. If you feel like you need to make an excuse to do that, I'm happy to be the person having the "emergency" you need to go tend to.
I can't imagine what it's like to live inside your body. I don't always know how to accommodate you; please tell me. If you can't tell me because it's just one thing too much, I hope you'll forgive my mistakes while I try to figure it out.
Many of you live too far away for me to help you in a practical way. I suspect that having someone take care of a few loads of laundry or run to the grocery store would help many of you. I hope you have people in your lives who do that for you. (For those of you who don't have a chronic condition, I hope - I know- you're stepping up to do these sorts of things for the people you love. They need you. They don't want to tell you that.
Sometimes I am not patient. I don't sit still well. I can't walk slowly (shallow hip sockets make slow hip movements painful and unstable). I can't drive without music; I'm not very good at being quiet when a song I know comes on. There are times that these traits make me a poor companion, but I don't mean to exacerbate your headache or make you feel bad when I go off without you. When I need to be loud and bouncy and hyper-kinetic for a while, you may find me inadvertently cleaning your kitchen or organizing your closet while you rest unless you tell me something else useful you'd like me to do. I don't mind. It's nice to feel helpful.
If you are a person who loves someone with a chronic illness, you are not alone. The amount of thought and effort that goes into simple daily routines and the amount of energy expended to hold space and care for someone else's needs is huge. If you want to talk about it, I'm here. If you want to talk about not-it, I'm here. And if you just want to take a few minutes for yourself, I won't be bothered at all by the radio silence.
