Cystic Fibrosis Unsolicited Advice

Living with CF can be challenging, and it certainly is not made any easier by all the unsolicited advice dished up by strangers.

Many in the CF community shared that they lived with constant feedback from people they do not know. To hear more about the types of comments the community deals with, we asked followers of our Facebook page to answer: “What are the things NOT to say to someone with cystic fibrosis?”

More than 200 people answered the question, sharing the unsolicited advice they most dislike. Here is what was said.

“You should not allow your daughter to eat like that”

Children with CF often need more calories since they lack the pancreatic enzymes necessary to digest food. Parents of children with CF are typically encouraged to feed their children lots of fatty and sugary foods to make sure their kids are getting enough calories. Sadly, because the public cannot tell when a kid has CF, there are those who might judge – loudly. Of course, it is absolutely none of their business, and hearing their comments can be annoying and painful.

“We were at a restaurant once, and the lady at the next table said to her husband, ‘Look at the butter and gravy on that child’s potatoes. I guess they want her to be fat and unhealthy.’ I turned around and told her off!”

“You should not allow your daughter to eat like that. It is unhealthy for her.”

“He told me that I should stop smoking"

Many in the community shared that people just assume they are smokers because of their non-stop coughing. CF is a genetic disease and has nothing to do with lifestyle. It is unfair that people think smoking is the only reason someone would cough. We commend those in the community who correct people who accuse them of suffering the consequences of smoking. By educating the public 1 person at a time, you are hopefully making it easier for others living with CF.

“I was coughing, and he told me that I should stop smoking and I would not cough like that. I shut him up by saying ‘I do not smoke! I have a lung disease!’ He apologized immediately!”

“I cough all the time, and people would always say, ‘Have another cigarette’ like I smoked. Always upset me.”

“He will outgrow it”

Previous generations often thought of CF as a childhood disease, in part because years ago the life expectancy of someone with CF was lower. Today’s medicine has changed that, leading to much longer lives for those with CF. Still, despite improvements in medicine, CF is not a diagnosis that anyone outgrows.

“Yeah, that is what they say about my 11-month grandson. Oh, he will be fine. He will probably grow out of it. He looks healthy.”

"They will grow out of it.”

“He will outgrow it.”

“Have you tried essential oils?”

People who are into alternative medicine can be very vocal about it, offering solutions that nobody asks for. Curiously, those in the CF community shared that people have suggested essential oils, herbal tea, and a host of other natural cures. Yes, these might help make someone more comfortable, but are not going to cure a genetic disease.

“Have you tried essential oils?”

“Someone told me that reflexology and herb tea would cure me.”

“My favorite was when someone close to me gave me a book for Christmas that had a section highlighted that said CF was a hoax and could be cured naturally.”

Thank you to everyone who shared their experiences with public comments about CF. This is not always an easy topic, and we appreciate your candor.