Community Views: What People With Cystic Fibrosis Do Not Talk About

So much of the pain of cystic fibrosis is invisible. The diagnosis itself is not one that outsiders can visibly see, so conversations about cystic fibrosis are not often common. While it is true that there are many physical challenges that come with living with cystic fibrosis, for many people, some of the biggest sources of pain are emotional.

To hear more about the unseen challenges of life with CF, we reached out to followers of our Facebook page. We asked you to tell us: “What is something about CF that nobody talks about?”

Nearly 100 people in the CF community weighed in. Here is what was shared.

Dealing with death

There is no easy way to cope with hearing that your life may not be as long as you had expected. For anyone, this news is devastating. Yet, many in the CF community have found ways to grieve the loss of what they had expected life to look like. Many people also shared that CF pushes them to squeeze the most out of the time they do have. That said, it may be helpful to allow yourself to be sad, cry, and grieve.

“Being told you are dying.”

“I was told I am dying.”

“The pain of never having enough time.”

“When a doctor tells you as a teen you will not survive.”

“When the doctors give you a life expectancy.”

How difficult relationships are

CF can have a big impact on friendships, dating, and even family relationships. Many in the community shared that they feel stress and guilt knowing that their parents, partners, friends, and loved ones may outlive them. As for dating, it may feel like a huge challenge to find someone who can see past your cystic fibrosis.

“How dating and relationships often fail and are hard to start because of CF. Honestly, it is too much for the outside world to understand and stick around for.”

“That people will treat you differently.”

“How it affects the whole family.”

“Fear of making people love me when I am not projected to live long.”

The toll on mental health

People tend to focus on the physical effects of CF and less on the mental toll. However, the impact of CF on mental health can be just as debilitating. Living with fear and depression can be incredibly tough. Plus, not everyone understands why this diagnosis can be so emotionally draining.

Hopefully, there is comfort to be found among online support groups and communities like Cystic-Fibrosis.com. It can be helpful to share experiences with others facing the same challenges that come with living with cystic fibrosis.

“Your mental health suffers, but everyone puts that on the back burner.”

“I think no one brings up stress, depression, and anxiety.”

“There is a huge mental toll it takes on you, and mental health needs to be a priority.”

“Depression.”

The high cost of treatment

Many people with CF were diagnosed at an early age. That means they had to start treatments early on. Decades of very necessary doctors’ visits and treatments are not cheap. For many, this adds up to a huge financial burden that can be challenging to meet.

“The fact it is so financially draining.”

“The pain of losing your fortune to medical bills and becoming a welfare recipient.”

“It is costly to have.”

Thank you to everyone who shared. If you would like to start a dialogue in the community and share the challenges that you have experienced due to cystic fibrosis, please feel free to start a forum or share your story.