When you live with a chronic illness you hear a lot of crazy stuff. I’ve heard a whole spectrum of comments spanning from just plain ignorant to downright rude. Seriously, I could write a whole blog post just listing the nonsense people have said to me. I’ll spare you, because I’m sure you have a list of your own…. It’s hard for people to understand what they’ve never experienced, so I often think inappropriate questions come from this place of misunderstanding. Now, when your illness is invisible that adds a whole new layer of questioning because if people can’t understand what they’ve never experienced, then they REALLY can’t understand what they can’t see! So, here are…
5 Things to Stop Saying to Someone with Chronic Illness
(and what to say instead)
1. You Don’t Look Sick.
Well how the hell am I supposed to look, Shirley, to make you believe me?! Phew… sorry I have always wanted to say that in response to this comment but never had the guts. I think people intend for this comment to be encouraging, like it’s a good thing that we look better than we feel. Unfortunately, it has the opposite effect. It actually feels incredibly invalidating. Just because our pain and discomfort doesn’t look real to you, doesn’t mean it’s not valid.
What to say instead: How are you feeling today?
Side Note: Please just stop commenting on people’s physical appearance in general. You have no idea where they have come from or what they have experienced and what you intend as a compliment could actually be really harmful.
2. I wish I had a disease so I could eat healthier.
Believe it or not, several different people have said this to me over the years. When people make this comment, I think it’s stemming from a place of their own insecurities. Maybe they’ve been trying to improve their own health but struggle to stick with it and wish they could do better. What we hear is that eating healthier is some kind of privilege we’ve been afforded due to our disease. It uncomfortably puts us on some kind of pedestal or, worse, shames us for doing something that you think is “better than.”
What to say instead: It seems like you do such a good job managing your symptoms with food. How do you do it? What is that like?
3. Maybe if you exercised more you would feel better.
I think exercise is commonly used here, but feel free to insert any kind of unsolicited advice (this diet or that, sleeping more, meditating, x, y, & z supplement)… you get the idea. People often feel helpless when faced with chronic illness. It makes them feel uncomfortable because a) they don’t know what to do about it and b) it can’t be fixed. So, in an effort to placate their discomfort, they try to be helpful by offering advice. It’s coming from a good place, but ultimately really isn’t helpful. I can guarantee you that we have already tried everything on your list and then some. All we really want is for you just to listen to us, without judgement or trying to “fix it.” Just be there.
What to say instead: How can I support you right now?
4. If you pray, God will heal you.
Wow, this is a hard one. I honestly don’t know where the motivation behind this kind of comment comes from. Faith and spirituality can have a very deep role in someone’s healing journey. My faith is the foundation for my life, and I’ve struggled over the years with how my belief in God plays into my chronic disease. It’s incredibly personal and this kind of comment can be very harmful. I don’t mean to launch into a conversation about illness & spirituality, but what we hear is that God must not love us enough or care about our prayers if he doesn’t heal us.
What to say instead: How can I be praying for you?
5. It must be nice to spend so much time resting.
I’m not on a freaking vacation, Mark! What do you think I do, lay around in my chaise eating bon bons and watching soap operas all day? Look, maybe this kind of comment stems from misplaced jealousy. Maybe you’re feeling overworked and in need of break, but this really comes across as a major judgement. When we say we need rest, that doesn’t mean we’re lazing around the house napping for pleasure. For us, rest is a necessity that literally keeps us living our lives and if we don’t, we might end up in the hospital. For me, when I say I need rest it’s actually code for “I was up all night having raging diarrhea and horrible stomach cramping, so now I need to recover.”
What to say instead: I really admire how you prioritize taking care of yourself.