The Grief of Living With CF Needs to Be Felt

I hadn't realized the extent to which having cystic fibrosis helped shape me as a social worker, until I opened up to my coworkers about my disease. Through those conversations, I have come to understand that isolation causes many people with CF to struggle and that connection to others and a support system are key to coping with this disease.

| 5 min read
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Katie Kirby, MSW
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Since high school, I have wanted to work in mental health. One of the questions that drove me to this field was wondering how I was able to stay mentally healthy, while I saw so many other people with cystic fibrosis struggling with depression and anxiety. My clinical work has helped me answer that question, and conversations with my coworkers have also helped me have a deeper understanding of my experience with CF.

When a supervisor first asked me how my experience with CF helped to shape me as a clinician, I naively thought it didn't.

I thought CF motivated me to enter this field, but not much more. About a year later, as I heard my director talk about how his lived experiences affected how he approached therapy, a light bulb went on for me. My work is grounded in relational cultural theory, a theoretical orientation that emphasizes the essential need for connection and participation in growth-fostering relationships. This theory supports the belief that isolation is one of the biggest sources of suffering for individuals. In that moment, I could see what a central role CF played in my understanding of why people struggle.

As a kid and teenager, I didn't know another person with CF, but my family and friends helped me never feel alone. My parents and siblings not only talked about CF and kept me company as I did my treatments, but also taught me the skills to build deep, meaningful relationships and be able to talk to others about CF. When I think about what has kept me mentally healthy while navigating the challenges of CF, I credit these relationships. These connections give my life meaning and keep me grounded, especially when facing all the uncertainty of what life with CF can look like. These experiences have led me to believe that some of the most important things I can offer my clients is a space to be accepted exactly as they are and to have someone help them process their experiences with empathy and compassion.

Not only do relationships help us feel connected and bolster our mental health by reducing feelings of isolation, they also lead to a deeper understanding of our own experiences. I was initially very hesitant to talk about CF with coworkers. I told my supervisor but otherwise didn't really share that part of my life until I had been working there for several months and was starting Trikafta®. I am so grateful that I took that risk because it has allowed me to have a deeper understanding of my experience with CF.

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Our staff often talk about the importance of culture and the privileges and opportunities that come with different identities. My director shared his experience of grieving whiteness and not having access to the opportunities that come with white skin. That comment resonated deeply with me and helped me reframe my thoughts and feelings before my wedding in 2019. In the months leading up to getting married, I worried about what the future might hold in terms of my health and the impact that might have on my husband and our marriage. No one is guaranteed a tomorrow, and yet, most people assume they will live a long and healthy life. Although I have all the hope in the world that I will live a very long and healthy life, I also don't assume that, and getting married caused me to confront that in a whole new way. I needed to grieve not having the opportunity to assume lifelong health, especially while planning for a future with my husband. Seeing it as grief helped me better understand why processing those fears through talking and crying with my husband was what I needed. By letting myself do these things with my husband, we were able to find a way through.

Grief is often difficult to sit with and talk about because others so often want to help us just feel better, but really there is no fixing grief; there is only acknowledging and sitting with that sadness, while also finding those who will support you through it.

I think for people with chronic illnesses it can feel like there is pressure to always remain positive, but I think it is just as important to honor the sadness and grief that can come with living with CF.

I believe that connection with others and allowing others to help you move through the difficult emotions and grief that can come with living with CF are key to remaining mentally healthy. 

Interested in sharing your story? The CF Community Blog wants to hear from you.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Emotional Wellness
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Katie is passionate about cooking, reading, traveling, and mental health. A graduate of the Brown School at Washington University in St. Louis, Katie is a licensed social worker who works in college mental health. Katie is part of CF Community Voice, CF Peer Connect, and the Adult Advisory Council for the Cystic Fibrosis Foundation. Katie lives with her husband, Tyler, and their two puppy sons, Talula and Talubb, in St. Louis.

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