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Community Views: The Unspoken Emotional Impact of Cystic Fibrosis

Living with cystic fibrosis (CF) is challenging in so many ways. When we talk about CF, we tend to talk about the ongoing doctor visits or the physical aspects of the condition. What we often do not talk about is the emotional impact of CF.

To find out more about your experiences, we reached out to community members on the Cystic-Fibrosis.com Facebook page. We asked you to tell us: “What are some things about CF that nobody talks about?”

Here is a glimpse at some of the responses of community members who were willing to open up and share their feelings:

The PTSD

This diagnosis takes a huge toll on caregivers and people living with CF. It causes ongoing emotional stress, which can look like anxiety, fear, or depression. Dealing with so much emotion for so many years has an undeniable impact. The first step is acknowledging how much you have been emotionally and mentally affected by this condition.

“The mental stress that comes with all the ups and downs.”

“The PTSD.”

“Anxiety, stress, and depression. They are all one and the same!”

The possibility of death

Perhaps the hardest part of CF to talk about is that a person with CF may die young. Few people like to talk about death, and it is a topic that is made even more uncomfortable when it involves young people and chronic illness. Many often do not know what to say, so they avoid the topic altogether. Instead of avoiding this hard conversation, it could be healthy, helpful, and healing to talk about this with a safe person such as a therapist, religious leader, or caseworker.

“The day that comes when you lose your child.”

“Living with a possible death sentence.”

“Wondering if they are going to live to their next birthday.”

“The loss of a loved one.”

The way it affects the whole family

People with CF do not live in a vacuum, and their diagnosis often has a ripple effect throughout families. Siblings might have feelings they do not know how to talk about. Family members may feel that their stresses or fears are not as big as those of the person who has CF, so they may hesitate to bring them up. It can help to set up times for discussion with each other or a therapist so everyone in the family can share and feel validated.

“Affecting siblings.”

The loneliness

Nobody wants to feel like they are going through hardship alone. If you have CF or are the parent or caregiver of someone with CF, it may feel like nobody knows what you are dealing with. Community helps. Perhaps your hospital has groups that meet to discuss what life with CF is like. There are also online communities such as this one, where people come to vent, talk, and get and give support.

“The loneliness of being a CF mom.”

The inspiration

A few members of the community shared how inspired they are by their loved one who lives with CF. Specifically, they said that watching them live with the condition while not losing hope is a powerful reminder that there is still so much joy, love, and connection to be had in this life.

“The incredible amount of strength, courage, and sheer fortitude to keep living life to the fullest while pursuing their dreams.”

Thank you to everyone who shared emotions for this story. We really appreciate how honest and vulnerable many of you are within this community. Thank you.

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