Ask the Health Leaders: Grief in the CF Community

People with cystic fibrosis (CF) often deal with grief in the CF community. We asked the CF Health Leaders what their experiences have been like when dealing with grief. Here's what they had to say:

Grief over our loved ones

Response from Meagan:

Long before I became a CF mom, I was a CF cousin. My cousin Lisa had CF. She thrived throughout her life while battling the disease but unfortunately passed away in 2014 at age 27. She spent the last month of her life in the hospital waiting for a lung transplant that she eventually became too sick to receive. She was young and had fought incredibly hard her entire life, and was so close to something that could have drastically changed everything.

When I learned about my daughter’s CF diagnosis just over 2 years later, I grieved again. I knew so much about the disease because of Lisa and I was scared about what that meant for my daughter. Since Lisa’s death, so many medical advances have occurred for patients with CF. While this makes me so hopeful for Margo, it is not lost on me that these treatments and medicines came too late for Lisa.

Grief over strangers

Response from Moriah:

The only experience I can really say I've had with this is from when I was being evaluated for a double-lung transplant. I get hung up on the idea that for me to get lungs, means that someone else doesn't get lungs. I guess it's kind of like survivor's guilt.

Grief over the cystic fibrosis community

Response from Mikayla:

I find that grief in the CF community hits hard. It is another level of sadness when it is “your own kind,” people you share so many similarities in your life with. There is a connection among CF patients that is unexplainable. To see someone experience a surgery that helped me, a treatment that made me feel worse, or not receive a medication that changed my life; all of my emotions get stirred up.

Even worse, when someone in the CF community loses the fight, it’s heartbreaking to witness. I feel sad for that person, that person’s family, and selfishly, me. I shouldn’t, but I can’t help but think that the same could be in my future. It is important to never lose hope.

Response from Janeil:

There are so many spectacular benefits to having friends who share your disease: Support, understanding, advice, laughs, etc. However, the grief and loss that come along with these relationships is one of the really hard parts about investing in people who also know the hardships of CF.

Truthfully, it’s a bizarre experience to feel so deeply for a friend you might have not met in person or spent a significant amount of time with physically. However, that never stops me from feeling devastated when my friends with CF are hurting. You feel really helpless because you want to help them and their families, but you also know CF is its own beast. It just hits differently; maybe because we all understand those feelings a bit too intimately.

I don’t think any of us stop thinking about the people who died too quickly or are in really bad shape right now. It really weighs on you as a person with CF. It's one of the hardest parts about opening yourself up in the CF community. In the end, the severity of grief points to the existence of great love and admiration.

Response from Katelyn:

Grief is so complicated and encompasses so many emotions. I don’t have very many close cystic fibrosis friends. It isn’t because the community isn’t amazing, but it is because there is a certain level of grief. Having close CF friends who have passed away. Seeing friends not have success with medicines that seems so hopeful at first. There is deep grief as you watch them from afar because you can’t be there to support them. Additionally, as I have lived life with Trikafta for almost 3 years, I feel deep grief for fellow CF patients who cannot take it or do not have access to the medication.