Most of us with chronic illnesses will have several, if not all, of the following things said to us during our lives. In fact, most of us have these things said to us on a regular basis—from strangers, acquaintances, friends, and family. Some of these responses are outright rude, but most are said out of ignorance with the intent to be helpful. Hopefully this list helps healthy people become more aware of the subtext behind their responses, and my fellow spoonies are affirmed that they are not alone in their frustrations at constantly hearing these things.
1. “You don’t look sick.”
Here’s the thing… those of us with chronic illnesses are sick all the time, and whether or not we “look” sick, whatever that means (Bags under our eyes? Puking? Sweating blood? I’m not sure what people are looking for here.), can vary depending on how bad our symptoms are that day. Also, we’ve likely lived with our conditions for a long time, and so we may be really good at acting normally even though we’re in pain.
What to say instead: “That sounds terrible.” Or say nothing at all.
2. “You should go to the doctor.”
Oh, thanks, I hadn’t thought of that.
What to say instead: Nothing. We don’t need advice, just acceptance.
3. “You should try kale/supplements/yoga/this-miracle-cure-that-worked-for-me.”
This one is particularly frustrating because I always get the impression that if I don’t try this thing being recommended, I “deserve” to be sick because I’m not trying hard enough. People don’t get why I wouldn’t try something if there’s a chance it’ll make me feel better. What they don’t realize is that I’m probably trying five different things right now—medications one of my doctors has prescribed, physical therapy, a different diet, a new supplement, etc.—and maybe I just don’t have the energy to add something else to that list. Or maybe I’m tired of trying all the different solutions and living with the side effects and disappointment, and I just want to live my life for a while, sick and all.
What to say instead: Nothing. However, if you are determined to bring this thing up because you think it really might help and you have a close enough relationship with the person to know they haven’t tried this thing, first ask, “Are you open to a suggestion on something to try?” If they say no, or they say yes but then don’t try your suggestion, don’t bug them about it. Don’t judge. Let it go.
4. “You’re still sick?”
Well, that is what chronic means.
What to say instead: “That sucks.” Or nothing.
5. “Feel better soon!”
This is a weird one. People say this automatically when they learn I’ve had a bad flare-up or that I’ve got a chronic illness. I know they’re just being polite. They want me to feel better, which is a nice thought. But whenever I hear this, or get asked if I’m feeling better, I’m reminded of how our culture doesn’t value sick people, and I wonder if people will accept me even if I never get better. I’m still valuable as a person, even if this disability lasts my lifetime.
What to say instead: “I hope you have a better day tomorrow.”
6. “You’re cancelling again?”
Friends of people with chronic illnesses had better get used to us cancelling plans. Making us feel guilty when we don’t want to be stuck at home in pain doesn’t help anything.
What to say instead: “No problem. I’ll miss you, but I understand. We’ll try again another day!”
7. “I wish I didn’t have to go to work.”
Oh, do you? Do you wish you have a chronic illness so you can skip work whenever you want because you’re in pain so intense you want to die? Do you wish you have a chronic illness so that you can’t hold a regular job because you miss too many days? Do you wish you can have all the doctor appointments, experience all the misconceptions, take all the medications and deal with their side effects, experience ableism, and live in a society that often doesn’t make space for you? Do you?
What to say instead: “I wish our society made better spaces for disabled people.”
8. “You should exercise more.”
This is a frustrating comment to hear, because I know I don’t exercise enough. I know exercise is healthy for my body. The problem is, chronic illness comes with so much fatigue that I often don’t have the energy to shower, much less spend an hour in the gym. This comment is also particularly harmful to fat people, who often have even professionals dismiss symptoms and blame their weight on their problems. People can go undiagnosed for years because of this bias.
What to say instead: Nothing.
9. “Yeah, I’m tired, too.”
Chronic illness fatigue isn’t your regular “I just didn’t get enough sleep last night” tired. This comment is dismissive, and suggests you should just “deal with it” because everyone does. However, we often can’t just push through this exhaustion and expect to feel fine later or catch up on sleep later. Our bodies will shut down if we don’t rest.
What to say instead: “Can I come over and wash your dishes? / Can I make you a meal? / Can I drop off a smoothie?”
10. “Things could be worse.”
Of course they could, but we don’t need to compare pain. There’s enough suffering to go around for everyone, and one person’s pain isn’t invalid because another person is also in pain.
What to say instead: “I’m sorry you’re going through this. I’m here for you.”
People who say these things generally mean well, but it’s good to know how words can impact those of us with chronic illnesses and try to do better. I certainly don’t want my friends tiptoeing around me, constantly afraid they will say the wrong thing. But I also want to be comfortable enough to let them know when something is hurtful or unhelpful.
Of course, when these words come from acquaintances or strangers, it’s harder to know how to respond. I often say nothing because I don’t have the energy. I hope more people make the effort to educate themselves on harmful tropes and comments. Sometimes (often), the best response is nothing at all, because there just isn’t anything to say, and that’s okay. People like to fix things, but chronic illness can’t be fixed. It’s okay just to sit with someone in silence, or let them know you are there for them no matter what. The most helpful response is letting us know that we are valued, accepted, and loved just the way we are.