What NOT to Say to Someone With a Chronic Illness

By: Ann Pietrangelo

Who among us hasn’t put their foot in their mouth on occasion? Sickness and disability can make you feel uncomfortable and tongue tied. Here’s what you need to know about people who have a chronic illness: they’re people just like you. They don’t necessarily want to talk about their health every minute of the day and they don’t need anyone to remind them of it when they’re out trying to have a good time. It’s highly likely that they’ve spent a great deal of time learning about their condition and how to cope with it, so unsolicited advice is probably not a good idea, especially if they’re like these gems: At least it’s not…(whatever) The implication here is that things could be worse…and they certainly could, but so what? Just because something could be worse doesn’t mean it’s not challenging or that a person can’t be having a hard time. Telling someone with type 1 diabetes that they’re fortunate they don’t have stage IV pancreatic cancer is not helpful. Let’s put it this way: When you have the flu and you’re feeling like death warmed over you probably don’t need anyone to tell you how fortunate you are not to have a hot poker sticking in your eye, too — you already know that, but you’re still sick. Comparing diseases is a bad idea. Try this instead: “I’m not familiar with (whatever disease). If you don’t mind, I’d like to hear a little bit about it.” Or this: “I don’t know what it’s like for you, but I’m here for you.” You just need to de-stress Yes, don’t we all. If you’re alive, you’re going to have a certain amount of stress. Some we can eliminate, some we can learn to cope with, and some we’re just stuck with. Stress can certainly affect your health. And having a chronic illness? Well, that’s stressful. What you don’t want to do is sound as though you’re blaming that person for creating their own illness. It’s cruel to imply that they are ill because they don’t know how to handle life. If you have a friend who seems stressed, make a specific offer to help out, like making It’s all mental…you just need some positive thinking Tough one. Of course a positive attitude is better than a negative one. The mind-body connection is very real and quite powerful. But it’s important to remember that people with a chronic illness have the same range of healthy emotions as everyone else. They can feel sad or angry or proclaim it a frustratingly crappy day and still be positive people. And let’s face it, disease isn’t all in your head. Positive people get sick, too. Let’s not pile on by telling them they could fix it if they would only try harder. Instead, you could offer to engage in some positive mind-body activities together. Make a date to get massages, take a yoga class, learn to meditate, etc. I wish I had a handicapped parking pass Hmm…maybe you’d like a prime parking spot, but would you trade your health for it? Not likely. This one falls into the “be careful what you wish for” category. Just don’t say it. Must be nice not having to (whatever)…or getting to (whatever) Not “having” to work or “getting” to take an afternoon nap may sound enticing, but not working because you’re not healthy enough to work isn’t a good feeling. And though taking an afternoon nap to catch up on your zzzs can be refreshing, it’s a lot less fun it you need that nap because you cannot physically get through the day without it. It’s not a choice or a privilege, so it’s best not to go there. Instead, why not offer something that is nice, like hanging out together, sharing a meal or going to the movies? The (whatever) diet will cure you Dave Bexfield, who has MS and runs the site Active MSers, isn’t a fan of the diet police. “I get it, eating healthier and losing weight is good for you. So is avoiding crystal meth, poorly packed parachutes, and street gangs. But with my disease, multiple sclerosis, no diets have been shown to have any scientifically proven effect. So please, don’t tell me I should go on an anti-inflammatory, turmeric-laden vegan diet for my health, especially when we are out for a nice lunch together.” If you want to talk about diet, perhaps you could talk about it in the context of your own life, or as a general topic of conversation rather than as a cure for someone else’s illness. You should try taking vitamins instead of medication (or whatever treatment) Barby Ingle, president of International Pain Foundation, says, “Don’t judge. People have to be okay with the choices they make when it comes to their care.” Absolutely. We all need to get our vitamins, but it could be dangerous to suggest that someone ditch their medications in favor of dietary supplements. You don’t need that cane (or whatever assistive device) “Don’t try to take away my tools because of your embarrassment or trying to push me into being better,” said Ingle. She relayed the story of a friend who was asked to leave her cane in the car when attending a graduation because it would take attention from the big moment. Long story, short — the cane stayed in the car, followed by several days of pain and “see, you didn’t need the cane…” I can relate, I really can. I’ve used a cane during MS relapses, and have I ever gotten a boatload of unsolicited advice. “You’re too young for a cane,” was my favorite. Utter nonsense. You don’t use a cane because you want to be dependent on something. You use it because you want to stay independent. You want to stand on your own two feet, walk, and participate in life. If you’re living with a chronic illness, you do what you have to do to work around it and function. Whether it’s because of muscle weakness or balance issues or numbness, if a cane can help, it’s cruel to make someone feel foolish for using it. The same goes for walkers and wheelchairs and braces and handicapped parking placards and whatever assistive devices help a person get through the day. And, of course, everybody’s favorite: But you don’t look sick (or, but you look so good!) This is a favorite “what not to say” among people with chronic illness. The implication is that you look perfectly fine so why don’t you get off your ass and stop faking? Most chronic illnesses have “invisible” symptoms so it’s not hard to see why casual observers get confused. Personally, I don’t think people always mean this in a bad way. It could just as easily be meant as a compliment. Hey, if you think someone looks fantastic, by all means say it. Then ask how they really feel. Fear of saying the wrong thing might lead you to simply stay away and say nothing. That’s the worst thing you can do. Go. Talk. Hug. Be a friend. Do your best. If you make a mistake, apologize and move on. You’re only human, too.