A question for the Chronic Heart Disease Community

Thinking about how other people talk about your or your loved one’s condition, what are some words or perceptions that make you cringe? What do you wish people wouldn’t say?

Answers from the Community

Things that make me cringe are why aren’t you taking care of yourself? You know that this is going to shorten your life and that you’re going to die. I don’t understand why you’re so depressed. Just get up and do it. Are you sure you can eat that? Again, this is all your fault. You’re lazy, all these things just make you cringe. Usually, this is from family members who offer no support and it’s self-defeating, it’s suppressing. It really shows you what a lack of understanding and love.

The only perception that makes me cringe is that if you’re overweight, obviously some people can make fun of you or talk behind your back, with that. But I think, I wish people would better support people in their journey if someone is overweight and be more supportive that way and not making fun and knocking people down and stuff. But other than that, I mean I personally have not had people say words to me but I know there’s the perception out there that an overweight person is lazy and doesn’t want to get healthy and I wish people wouldn’t say that or think that.

I think my least favorite word is condition because I don’t want to be titled because I want people to think that I can still perform my daily activities like I normally do. But when I hear that word, it makes me feel less.

Some of the ones that really bother me the most are comments like, “You really don’t look sick. Are you really that sick? You seem so active and so normal. Are you really… Do you really have heart failure? Do you really have that problem?” It feels like there’s a lot of questioning. And then there is the ones that go the other way. “Oh, should you do anything? Should you go have fun?” Well, absolutely. That’s what keeps me going. That’s what keeps my life as normal as possible.

The worst is, “Are you terminal? How long did they give you? What are you going to do? What about your family?” And of course there’s always the people who say, “Oh, get up. You can’t use that for an excuse. Get up. You’ll feel better if you make yourself do something. It’s all in your head. Get up.” Those were the kind of things I don’t like.

Sometimes I cringe at the word patient or chronic issues, chronic pain, chronic health issues, chronic symptoms, anything that… Even though it is a lifetime progressive disease that I have, it does make me cringe. So even, I guess, progressive disease, even though that’s the reality, it does make me cringe. Yeah, thank you.

I wish people wouldn’t say, “Well, you look good. You don’t look sick,” is a big one that makes me cringe because a lot of times it’s very evident that I am having heart failure, and that I’m having chest pain or that I’m having problems breathing because of my heart. And so people only notice about half the time. It’s amazing to me that I could almost be falling over where I can’t walk or breathe or move, and people don’t really notice a lot of times. They’re not very observant. But worse than that is always, “Well, you don’t look sick,” as if I’m pretending to be sick. And so I’ve had to start proving to people. I’ll show them the test results or I’ll show them that the insurance company had to pay for this procedure or heart catheterization or whatever it is. So I really wish that they would think for a minute before they would say something like that, because to me, it equals them saying like, “You know what? You look good, so you must feel good.” And I don’t feel good.

This relates to COVID-19 and the pandemic. If I take my daughter to the store, she will cough even if she has a mask on and people will look or say things. They don’t really say much, but it’s more the look of death. That really is hard because she has a lung condition and a heart condition that’s similar to like having COPD, so she coughs a lot and people just look and stare and think she has COVID or something. That’s been really challenging and I wish people wouldn’t look and stare. It’s a child and they don’t understand what conditions she has.

I think one of the biggest misconceptions that really bothers me is that you have to stop everything that you enjoy altogether, meaning you’ve basically got to eat lettuce all the time, which is not true. Everything in moderation, you do have to eat healthy but you can splurge once in a while. Another one is that you’re really fragile. Some people think that they have to treat you with kid gloves and that you can’t do anything because you’ve got a heart attack, which is definitely not the case. And, I think some people see you as being tainted because you’ve had a heart attack, which again is definitely not the case. And, I don’t know if there’s really anything that people say that make me cringe, but just kind of those treatments are the things that bother me the most.

I don’t really have anything that people say or do concerning my heart problem that makes me cringe. Every now and then I will give in and let myself have a treat that isn’t necessarily heart-healthy, and some people will criticize me for that. I mean, other than that, there’s really just nothing. I’ve got a really good support system and I don’t have any cringe-worthy stories to tell. I guess I’m one of the lucky ones.

There’s not really too many words to bother me about the heart condition. My first provider did say if this gets too worse or worse enough, that I could end up having a heart transplant, which made me cringe a little bit, because I had just had kidney transplant. So I was a little nervous for that condition, but she also assured me that probably wasn’t going to happen.

I’m not real open about my condition with most of our friends and neighbors. A couple of them know of it. Sometimes I feel a little frustration on their part that I can’t do things to keep up with them as they would like. But again, typically it’s not something I discuss with others a lot.

People look at me and don’t see a sick person. They don’t realize that just because on the outside, I’m not… don’t look sick, but yet inside, having 10 stents and a bad heart is difficult. I wish they wouldn’t say, “Oh, you don’t look sick. There’s nothing wrong with you.”

I think one of the biggest things that I’ve heard is, “It’s all in your head,” or, “You can control it.” That’s not always the case with my condition, but those I think are the two things that actually are the things that make me cringe when somebody says it is that it’s something that I’m able to control or that it’s all in my head. Sometimes I even hear, “Well, you did it to yourself,” or this, that and the other, but really it’s nothing that I’ve done to myself.

Biggest question is, how are you feeling?