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Survivor’s Guilt

One of the hardest aspects of having CF is outliving the friends you make with CF. I know I fight mentally with the thought of, “When is it my turn?”

Our life isn’t sunshine and rainbows. We fight to live every day and we go through experiences that only a few can really understand. I lose sleep over it because I cannot shut my mind off; I am always thinking about cystic fibrosis and death. I don’t want to, but I do.

Death of a loved one with cystic fibrosis

I met an amazing person with CF during a CF online event. We were inseparable (virtually) for 3 years until he passed. We did treatments through webcam and talked every day. During hospital admissions we still video called. He knew my nurses and I knew his.

We talked about everything: our ports, medicines, and just how we felt. When he started getting worse, we both knew what was coming. He couldn’t have a transplant due to other health issues. We both came to the realization that he was not going to be around very long.

I remember he told me that he wished we met in person and he loved me like his sister. My heart broke each day. I didn’t sleep because I didn’t know when he would go. Before his death, he was still brave and still strong. Then, as quickly as anything, he went.

After his death, my husband and I did a memorial for him because I couldn’t attend his. I was on IVs and couldn’t travel.

Experiencing survivor's guilt

When my best friend died of cystic fibrosis, I felt guilty that I survived and I felt depressed that it wasn’t me. I would rather I go than him and I felt guilty that he had to go first. I did not understand why I was the one who lived and why he had to die. He was stronger than me and I thought we would live a long time together.

There was so much he wanted to do and I wanted so much for him to experience those things. I didn’t know what to do anymore because I was suffering inside. I wanted him to travel more with his wife and I wanted them to see Niagara Falls like he wanted.

I lost my only friend with CF--the only person who knew what I was going through. The person who I could talk to about CF and everything it does because he was going through it, too. I was alone again with CF.


I don’t know why I am still alive and he isn’t, but that’s how CF is. I hate the fact that people with CF die and I wish for a cure one day so no one loses another friend or family member.

I had to get grief counseling. While his death still hurts me, I am working on it. I am working on making sure his memory is not forgotten. I will work hard to be healthy and live as best as I can.

We made a promise to each other to always live like we were healthy. While it’s difficult because I can’t do a lot because I am sick, I do my best to make each day count now.

Have you experienced the death of a loved one with cystic fibrosis? Share their memory with us.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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