Talk to me.

Talking with someone who has a chronic health condition

I hurried past the pastor’s office, where I could see him sitting at work. I was there to meet my husband, who was working with the worship minister on a Saturday morning.

“How’re you doing?” the pastor called.

I gave a little wave, hurried past his door, and said what I always say: “Okay!”

He called even more insistently. “Come in here and tell me how you REALLY are.”

I am one of those people with chronic, nearly-unremitting pain. It’s exhausting, grinding, mind-numbing pain. But I don’t often share with other people how I’m feeling. I resist mainly because it’s a long story. I hate seeing the look of sympathy in other people’s eyes. I don’t want to bore anyone, nor do I want to draw attention to myself. So I give a pat answer.

But the pastor was not interested in that. He was genuinely concerned, and I walked in, sat down, and answered his question in more depth. And afterward my day went a little more cheerfully.

A few days later I sat down with a friend over coffee. She has a chronic health condition and is frequently in bed all day with pain. She and I don’t need to talk much about how we feel. We understand that it’s not our favorite topic, and we both hurt a lot of the time, so we talk about other things. The nice part of this friendship is that if one of us cancels on coffee because of pain, the other truly understands!

This brings up a topic I’ve read about here and there, and it bears repeating. How do you talk with someone who has a chronic health condition?

• Though our illnesses may vary, we still live among healthy people who may or may not really care to hear the full story when they are asking, “How’re you?” Thus the reason we may breeze past you with an easy “I’m okay.” If you honestly do want to hear how I’m feeling today, take the time to look me in the eye and ask, “How are you REALLY doing today?” I appreciate it when you pause to listen. I don’t judge you if you don’t.
• When you propose some activity and I turn you down–even again and again–it probably isn’t because I dislike your company. It might actually be that the activity will drain me of my last energy reserves for the day or the week. It’s why I don’t commit to regular activities, like weekly Bible studies or book clubs. If I do, I usually end up canceling often, and that comes off as inconsiderate. (I hate letting people down.)
• This blog contains a great story by a woman with lupus, who found a way to express to a friend how she must carefully consider her energy every time she must do something during the day. I like the analogy she uses, and I believe it’s appropriate for anyone with a chronic condition and with limited energy reserves. A couple of my friends understand the spoon analogy, and all I have to do is tell them I’m out of spoons for the day. They get it.
• Just because I look okay–meaning I am dressed, have makeup on, my hair is brushed, and I’m walking–doesn’t always mean I am well today. But I am here, and participating in life, and glad to be doing it. (You might not know that I nap when I get home. But at least I was there!) I still carry around a burden of pain, nearly all the time, every day, even though I don’t always show it. (Remember that although we have a chronic health condition, we still love to laugh, shop, go to movies, take an occasional walk. Getting out and about doesn’t mean I am suddenly healed. It may very well mean I have a few spoons left today.)
• “What can I do for you?” some may ask me. Sometimes I honestly don’t know. You can’t fix me a meal, because I have several dietary restrictions, and I feel like that’s too burdensome for an unsuspecting person to take on. So if you have a good idea, run it by me and I’ll tell you what I think. It might mean you can pick me up for a trip to the store or vacuum my floor. The little things help.
• I wish I had a dollar for every time some well-meaning person approaches me with a story of a friend or relative who has a chronic condition. They will tell me about a new exercise, treatment, dietary supplement, or doctor. Really, I DO know that your story comes from a very caring place. It’s just that I have probably heard that before, or have already tried it, or have read that the treatment you mentioned is just a bunch of hokum. For the most part, I’m not going to run out and try your theory (I’m not going to run anywhere…), but I might look it up if I haven’t heard it before.
• Please understand if I don’t want to talk about it. Sometimes I just want to cry, and I’d rather not make such a mess of myself. If I tell you I don’t want to talk about it, I really don’t. Understand that this might be a very bad day, and I’m doing my best just to keep it all together.
• Sometimes you might see me on a particularly bad day, when it’s hard to keep it all together. Give me a gentle hug if you want–but please make it gentle, since everything hurts. Offer me a smile and mention me in your prayers. If you must, buy me some coffee (decaf, since I also have chronic fatigue) or chocolate (if it works with my diet), or loan me a good movie.
• Look me in the eye and tell me you care. It lifts my spirits and helps me when I am low.