Things Not To Say To Someone With CF

It seems that many people with CF know someone who hasn't learned the rule: “If you cannot say anything nice, do not say anything at all.” Some people feel free to say whatever is on their minds about the diagnosis, and what they say may not be kind or helpful.

To learn more about the comments you hear the most, we reached out to our Cystic-Fibrosis.com Facebook followers and asked: “What are the things NOT to say to someone with cystic fibrosis?”

The question was answered by over 200 people, and here is what you had to say.

“You do not look sick is the number 1 thing I hear”

So many of you shared that you have had others tell you that you look fine. This invalidates the experience of having CF. By saying someone looks fine, it is implied that you should be fine. This type of comment is the opposite of empathy or compassion and shuts the door to understanding more about cystic fibrosis. There are some in the community who have chosen not to let comments like this stop them as they educate others about CF and how it is not a diagnosis where outside appearances tell the whole story.

“You should be grateful. You look like you are doing good!”

“Doctors and teachers telling me I do not look sick.”

“You do not look sick is the number 1 thing I hear.”

“My daughter’s coughing was upsetting her classmates”

The uncontrollable coughing is one of the hardest parts of cystic fibrosis. Not only is that uncomfortable for the person with the diagnosis, it often causes people who do not know about CF to have a negative reaction to the coughing. People in the CF community mentioned getting stared at or asked to leave places. In some cases, people understand after the CF diagnosis is explained, but sadly, this does not always help. Several of you shared that your loved one with CF avoids certain public places because of the coughing.

“My daughter’s coughing was upsetting her classmates. She was told to leave the classroom.”

“My son would not go to movies because of his cough.”

“The worst was being stared at when the boys coughed!”

“My nephew has CF and gets embarrassed with his cough, but he is such a sweet guy but does not like to go anywhere because of it, and that makes me sad.”

“Is your coughing contagious?”

Those of you who have CF or people who know about the disease understand that coughing is good – and helpful – for someone with CF since it helps release mucus. However, people usually associate coughing with colds and other diseases that are contagious. Sometimes people learn that you have CF and assume it is contagious, which is not the case at all. CF is a genetic disease.

“The morning of a party, the host called and asked my son not to come because some of the other guests were afraid they would catch it.”

“I have lost count of how many times my daughter has been blamed because she was coughing around someone and now they think they are sick.”

“Is your coughing contagious?”

“I still hate being told how young I look”

A lot of you receive a lot of comments about your size – namely how skinny you are, a common side effect of cystic fibrosis. CF causes problems with pancreatic enzymes, and people with CF are not able to get all the energy and nutrients from the food they eat. As a result, people with CF are often skinnier and smaller than other people, which makes them look younger than their years. This is not a helpful thing to point out.

“I still hate being told how young I look. I know it is not entirely a CF thing, but part of my youthful look is because I am so small. When people find out I have a 15-year-old son they feel like they MUST tell me how I look 12. I get some people think it is a compliment, but it really is not a compliment to tell a 35-year-old that they look 12.”

“I have been told I looked like I was 12 because I am so skinny.”

Thank you to everyone who opened up about their experiences with CF. We are always grateful that this community shares so readily and makes this a safe and caring place for others to also do so.

What comments do you not want to hear about cystic fibrosis? Share below!