A question for the Cystic Fibrosis 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

I think one of the biggest misconceptions about having CF was that it was contagious, and this was something that I dealt with a lot in my life, especially when I was in elementary school and high school. Children were afraid to be my friend or come near me. And when they found out I had CF, if word spread, because they thought they could get it or their parents would tell them they could get it. And I would also be afraid to tell people that I had CF, even though I knew they couldn’t catch it, I would never have put anyone at risk, but I was afraid that they would think that. So that was one of the reasons I was afraid to tell people. And all these outdated medical books that other people would read, they’d say, “Okay, you have CF,” then they’d go research it. And they obviously would know as much as I did or the latest information like I did, so they would come telling me all this outdated information, horrible things. And I read this and I heard that and it’s just like, stop. You need to get your facts right. And when I was little, it used to really bother me because I would get scared because I didn’t know if what they were telling me was true or not. And I would go home to my mother and tell her, and she would tell me, “No, that’s not true anymore. They have these new medications,” and this and that. So people need to educate themselves about what they don’t know, especially before they go around talking about it like they’re an authority. And CF definitely is not contagious. And the lifespan of someone with CF is greatly improved, and there are way more medications and there are now. And also, another thing that happens to me all the time that I can’t stand is having a cold or whatever is, well, it’s bad for anybody, but it’s particularly worse for us because it’s a pulmonary disease, and so the coughing and this and that. So if we’re recovering from a cold or even if we’re well, there’s a lot of coughing and sneezing and well, I’ll get to the thing about COVID in a second. But before then it was if your cough or continuously cough if you’re on a train or a bus route, and so people just automatically think that you’re sick. Or sometimes a CF cough is so loud, people think you’re sneezing and they say, “God bless you.” And what I was going to say about COVID is thank goodness they came out with this medication in January called Trikafta that helps stop the coughing so much, because I can’t imagine being out coughing now because of CF, and people would think that you have COVID. So it’s these out of date things that people say, wish they wouldn’t say, or when I was little they would say, “I heard you’re going to die when you’re a teenager or before your time.” That is definitely cringe-worthy, and educate yourself. Through education you can elevate yourself to be a more knowledgeable person. I wouldn’t go to somebody that had cancer, because I don’t have cancer, and start saying, “Well, I heard this and I heard that.” Not only is it rude, but it makes you look really ignorant because you’re talking out of your you know what, because you haven’t read about it and you don’t know all the facts.

I think the biggest thing for me throughout my life has been the question, especially when I was younger, I got the question about life expectancy a lot. When we were younger, kids aren’t really aware of the implications of the things they ask. And I just don’t think that the life expectancy is very relevant with people with CF, since it’s such a diverse illness. I wish that people didn’t really use that as some kind of explanation for what’s going on. I think a better explanation would be to talk about the symptoms and the daily life. Another thing is just when I’m coughing in public, a lot of people are looking at me like I’m contagious, especially with COVID. So, not doing it as much any more because of Trikafta. Thank God. But that is definitely a misconception of people seeing me cough and moving away or just blatantly staring at me. It’s a big issue. And I think education around the disease would probably help with that.

Probably the ableist view that my life can be looked upon as an inspiration story to make other people feel better about their lives, and the things I go through I’ve just known my whole life, so it seems like my, “Normal.” But, sometimes able-bodied people will look at someone who has a condition like myself, and be just kind of, “Oh, well, you just existing is inspiring me to live.” I don’t exist to make other people feel better about their lives.

Think about how people talk about my condition, some perceptions? Well, the biggest thing to me is that someone said that, oh, I’m probably only traveling because I’m going to die sooner, and that was the worst thing you could possibly say to me. And I think that’s just the misconception that everyone’s going to die at the same age, and so I wish people wouldn’t say that to my face and just let me live my life, because anything can happen. But other than that, people are pretty respectful of the condition, but definitely not talking about death because that makes me cringe.

I wish people wouldn’t say that I keep my daughter in a bubble or that it’s just a cough, it will get better soon, or I have people tell me that her illness will just go away if you pray for her. I’ve heard, “Why do you let her eat that way?” Because she requires higher fat, higher salt diet. We let her eat that way because she needs to. And probably the worst thing I’ve ever heard from a family member is that my child will get better in time. I guess that’s probably the worst thing I’ve ever heard, and unfortunately that isn’t the case.

I don’t like the word chronic illness, or that’s not really it, terminal illness. That’s, I think, life-ending, getting ready to die, terminal illness. I know it’s chronic so it’s … I don’t really hear anything that I wish people wouldn’t say. They’re all pretty knowledgeable that I’ve talked to, so there’s really anything that I hear that makes me wish people wouldn’t say. But yeah.

Some of the things that I wish people wouldn’t say is when they refer to us with cystic fibrosis as a sick kid, or they put limitations on us without knowing us individually, or they make assumptions based on the disease and expectations and they have doubts. That is for those types of people. Then there’s also, of course, the very supportive people. But that’s some of the things that I wish people wouldn’t say is things like, “You can’t do that because you have cystic fibrosis.” I always want to change that to, “I can do that.” It is possible and setting my mind to things. It’s always up to us, not someone else about what our abilities are.

Many times they don’t fully understand the disease and compare it to things like asthma, which is true, but it’s much, much different. I’m constantly educating people on cystic fibrosis.

The only thing that I think that has ever bothered me is when people will look at me and just tell me I look tired, or I look sick, or how do I feel today? Because I look like I don’t feel well. And for me, that’s a polite way of saying, “You don’t look good today,” or… It is very hard to not take that to heart. That has been one frustration I’ve experienced over the years.

Words that make me cringe would be, spoonie is one. I hate when people call people with cystic fibrosis spoonies. The amount of spoons you have and when you run out of spoons you’re done. I don’t live by that. I do you as much as I want and I can, and I push myself to do more than I can. Sick, I guess. I hate that word. I’m not sick. I guess I was born with a disability, but I don’t let that be a part of me and I don’t like being characterized as sick. It doesn’t define me.

I don’t hear a whole lot of negative things from my friends. I do recall one time, a few years ago, a friend of mine who has a son the same age as my daughter made some reference to, “Wouldn’t it be cute if they got married? Oh, but I’m not sure what the life expectancy is of your daughter.” Suggesting that she wasn’t going to live long enough to get married. And that was extremely hurtful and caused a lot of tears. But I don’t experience that very often. I think more likely than not friends and family forget that my daughter even has a condition that can be life-altering and life-limiting. So sometimes I actually wish that they were a little more aware of how hard she has to work for her health. Sometimes I cringe when I hear other parents of children with the same disease and they are limiting so much what their child can do. They say my, “Oh, I don’t let my child get in the lake or travel overseas or play in the mud,” or do anything that could even remotely cause them to have more germs, more bacteria breathing difficulties. Sometimes I think parents take that too far. And that makes me cringe when parents aren’t letting their children with cystic fibrosis just live a life and be a child. I know there are things that you have to do to be cautious and be wise, but I feel like some parents take it overboard and that probably makes me cringe more than anything.

I wish people wouldn’t say that “everything’s going to be okay,” because sometimes things are challenging and it’s okay that they’re difficult and they need to be worked through. I also don’t like when people say, “Just make it through the day,” because sometimes that is a big challenge and I don’t think they understand it. I also wish that people would just say, “You’re different from everyone else. There are people who are always going to sicker than you, but there are always people who will be healthier than you as well.”

Well saying that’s CS is considered to be called the invisible disease, one of them sayings that we hear a lot is that, “He doesn’t look sick,” because on the outside they do look very normal but on the inside is where you can’t say where the condition lies. So, “He doesn’t look sick,” or, “Wow. He’s kind of small for his age,” because CS kids can tend to be a little smaller. Also one is, “Oh, CS is kind of like asthma,” which very different from asthma. Those are three of the biggest ones that have made us cringe in the past, or now with the new medications that have come out, “Oh, now there’s a cure,” because that leads to non-monetary support when it comes time for our walks and fundraisers because they think with the new medication that it’s automatically a cure. So those are our four main ones that we hear a good bit that make us kind of cringe.

Probably the one thing that bothers me most that … And not very many people say it, but there have been times that people have said something like, “Oh, you can’t do that. Or you don’t need to be doing that.” And I’m not one that likes to be told that I can’t do something. It’s one thing to say, “Let me help you with that. Let me help you carry that.” Whatever. But when people start, “Oh, you can’t do that.” Yeah, that really, really irritates me. That makes me want to do it that much more, which sometimes can be to my detriment. But, yeah. Don’t tell me that I can’t do something.

I just wish that people would understand that cystic fibrosis, my condition, affects everybody. While I have a lot of similarities there’s also a lot of differences in that it’s a unique experience for each.