I read a lot about what to say and what not to say to a person who is chronically ill. There are lists and lists of “Do’s” and “Don’ts” and honestly, it seems like a lot to remember!
So, from my experience of being sick for nearly eight years, I thought I would just talk to you about the things people say to me, why it hurts me, and offer some suggestions about what you might want to say to your friends or loved ones instead.
If you have known me well for a long time and we talk a lot, please don’t keep asking me how I am feeling. I have been sick for almost eight years, you don’t need to ask me how I am feeling any more. I’d much prefer something like “How are things?” or even “How are you doing?” You know, kind of what you say to your healthy friends? If there is something new, good or bad, I will bring it up to you.
Please stop telling me to “Hang in There”. I’ve been hanging for almost eight years, how much longer do you expect me to be able to hang for?
Now here’s what you CAN say to me. I would really appreciate your honesty. If you are my good friend or in my family, it’s okay if you say to me, in a heartfelt way, “I just don’t know what to say to you any more about you being sick”, and do you know what I would say? “You don’t have to say anything. Just be my friend, keep calling me, keep inviting me to your events, even if I can’t come, maybe sometimes I can. Just talk to me like you would any person and if I want to share something with you about my illness I will. Just keep believing me, and be my shoulder to cry on if I need you to.”
What can you do for me? If you live close to me you can ask me if I need anything at the store because you are going, and for me going to the store can feel like climbing a mountain. Ask me if I need something tidied up in my house. (I can’t remember the last time I cleaned my oven or my linen closet, I can barely keep up with the laundry.)
You can offer to cook a meal for me. It is really hard for me to do, since I cannot stand, my hands hurt and I am exhausted. You can offer to come and play with my son while I take a nap, he’s very nice, or to have a play date over at your place, with no reciprocation expected because I would not be able to do that.
And every so often, keep asking what you can do for me. Because sometimes I am too proud or too sad to say, “Yes, I need your help”, but one day, I may just take you up on it.
I hope this helps people who have chronically ill friends and loved ones, and maybe gives them some insight about why we might bristle a little when you cheerily tell us to “Hang in there!”