How to Respond When Others Just Don't "Get It"

One of the many complaints people living with chronic illness have is that their friends and loved ones just can’t grasp the concept of a chronic illness.

They don’t understand that even the smallest tasks will wear us out! With our bodies putting most of their energy into fighting our diseases, we only have a small amount of energy left to get up in the morning, take a shower and live our lives.

But this is a hard concept to explain to healthy people. Here, are several ways for you to deal with some of the more hurtful and frustrating comments.

Hurtful comments about chronic illness and how to respond

Comments around invisible illness

“You don’t look sick...you look great! You’ve gained weight. You needed some meat on your bones.”

First, you must remember that comments like this are often meant to be helpful and complimentary. Not easy, I know. Sometimes you just want to hit them in the face... but don’t do that.

That would be the opposite of what you’re trying to accomplish! You can use this as an educational opportunity. Some things you might say are as follows...

• Thank goodness for makeup, right? And this weight gain is from the steroids I’m on. We are trying to get me off of these things because they cause a lot of harmful side effects.
• I know, I do look good, don’t I? I wish my intestines looked as good as I do on the outside. Right now I have two fistulas, multiple bleeding ulcers in my colon—which, by the way, have caused my anemia—and I’m actually having surgery next week to repair some of my intestines, so...yeah, it’s rough.
• It’s the steroids. They give me the appearance that I have gained weight, but it’s actually just water weight. These steroids are rough. They keep me up at night. They cause severe joint pain. They also cause osteoporosis. But right now, they’re what helps me get through the day.

Comments about work and employment

“It must be nice to not have to go to work every day...”

This is one of the most annoying comments. I have found these comments to be snarky. I am sure, however, that some of them are meant to give you a different perspective...Whatever tone they’re given in, here are a few ways you can respond...

• Actually, it’s not nice not being able to work. Some days I can barely get out of bed. Other days I’m in the bathroom a lot because things I eat either run right through me or, I can’t keep them down. I wish I could work! Then I might actually be able to pay off some of my medical debt.
• I wish I could say it was nice, but it isn’t. Not being able to work because I’m puking my guts out all day or curled up in pain is not the same as being on vacation.
• No, actually, it’s not nice. I often feel guilty for leaving other people to care for me. My body is preventing me from being able to take care of myself and it’s really frustrating for me.

Comments saying you should exercise

“You know, if you got out and exercised, you might feel better.”

I also hate this comment. I know that many of the comments like this one are also meant to be helpful. But it’s hard not to be frustrated when you hear this one because many people are physically active before they’re diagnosed. I was! I was a dedicated student of Shotokan karate. So how do you respond?

• I really miss exercise. I was almost a black belt when I was diagnosed, but then I got too sick to continue.
• I do try to get out when I can—when I’m having good days. Sometimes exercise hurts too much. Other times, I can’t move without excruciating pain.
• I’d love to get out and get some exercise but I’m always drained of energy because my body is busy fighting a vicious disease.

Comments about weight loss

“You’re so skinny! Are you anorexic or something? Go eat a burger!”

I’ve always hated this comment, too. People don’t understand that when you have a chronic illness, food can be torturous. Keeping weight on is difficult when food either runs right through you or comes back up. They also don’t understand that our bodies just don’t tolerate certain foods... as if this wasn’t annoying enough, their lack of understanding is only worse and it can make you feel bad about yourself. How do you respond?

• No, I’m not anorexic, I’m sick. And burgers are just about the only thing I can eat, but it doesn’t matter how many I eat, I can’t keep the weight on.
• I can’t eat a burger. My body doesn’t tolerate food well and I have to be picky about what I eat.
• Believe me! I’d love to gain a few pounds so my clothes will fit me again, but I’m really sick and my body just won’t keep the weight on.

“Gah! I wish I was as sick as you so I could lose a few pounds...”

This line is usually said out of envy and really, there’s only one response you can give that will set them straight...

• No, you really don’t. I’m in and out of the hospital and constantly in pain. If it weren’t for modern medicine I’d be even sicker... or worse.

When people compare Crohn's or UC to a stomach bug

“Oh, I had a bad stomach bug once... I get it.”

Another line that can rub a lot of us the wrong way. The thing about this one is that people are attempting to empathize. And a stomach bug is the best way they know how to. The way you might respond to that is by affirming the pain of the stomach bug, and explaining it further...

• Yes! That’s what it’s like... only there’s no end in sight. You get diarrhea, vomiting, stomach cramps, fever... all the classic stomach bug symptoms, but then you also have to take medications that can be quite harsh on your body. These medications bring things like osteoporosis, joint pain, moon face, insatiable hunger, acne, hair loss, night sweats and so much more. You know how when you get food poisoning you almost expect to die from it? That’s how it can be every day with inflammatory bowel disease. And you’re in and out of the hospital as doctors scramble around trying to figure out how to help you... and then you end up disappointed because you know this is something you’re going to live with for the rest of your life.

Others offering advice or alternative methods to try

“Have you tried ____? My cousin’s friend’s grandpa’s nephew did and he’s doing much better/is cured!”

Again, this is another attempt at trying to be helpful. But it is something that we’ve heard over and over again to the point where it gets annoying. It could be a diet. It could be a supplement.

Or it could be a crazy home remedy that’s supposed to heal you. We all know that there isn’t a cure for IBD, but the fact is, the people saying these things don’t realize that. How do you handle this one?

• I wish it were that easy. But I have tried that. What works for him doesn’t necessarily work for every IBD patient.
• IBD is a lot more complex than diet/supplements/home remedies. There’s not a cure, sadly. I wish that would have been helpful for me, but I’ve tried so many things and the only thing that helps right now are the medications I’m on.
• Diet change doesn’t help every IBD patient. The thing about these diseases is that they’re all so complex. Finding a treatment that works can be very frustrating.

Try to be patient and kind with these comments

The last thing I want to say in regards to how you respond to people who don’t get it, is that you always, always, always want to do your best to be kind. Most people aren’t trying to upset you. Most people don’t say things out of malice. You will get frustrated with people. They will make you want to yell at them... but again, most of them say things without thinking.

Whatever you say in response, try to turn the situation into an opportunity for you to educate them. The sad truth is you can’t make everyone understand... but some people might surprise you. It just takes patience and a willingness to be open, honest, and real with them.