Finding an Identity Beyond CF and Motherhood

As I continue to realize the benefits of Trikafta® and my daughter grows up and needs me less, I feel as though I’m losing key parts of my identity — being a person with cystic fibrosis and a mother. However, I’m also finding I have room to let myself grow and explore different sides of myself.

| 6 min read
Jenny Livingston
Jennifer holding hands with her husband and daughter.

As we go through life, our experiences, relationships, beliefs, and memories make up our sense of self — our identity. Although there are many complex and nuanced aspects of my identity, motherhood and cystic fibrosis seemed to overshadow all the other parts of me for a very long time. 

For as long as I can remember, CF has played a starring role in the production of my life. It has demanded my energy and attention, made it difficult to plan, presented challenges beyond measure, and caused my deepest heartaches. On the other hand, it has also fostered meaningful relationships, highlighted my strengths, taught me to appreciate even the tiniest wonders in life, and encouraged me to live in the most authentic way possible. Throughout the years, these experiences have integrated into my character and made me who I am.  

Since I was a child, my greatest dream in life was to be a mother. When my daughter was born, I was instantly and eternally transformed. My capacity for love grew exponentially overnight. I knew that I would do anything for that baby girl, and she immediately became my sole focus. For the next several years, my greatest challenge would be learning how to balance caring for myself and meeting the demands of CF while navigating motherhood. 

Because of the unpredictable and progressive nature of CF, it’s always been difficult to make plans. In fact, I’ve never been able to imagine myself more than just a few days, weeks, or months into the future. The day-to-day was so consuming that I became very good at focusing on the present, surviving whatever crisis I encountered next, and loving my daughter to the absolute best of my abilities.

Soon after I started taking Trikafta® in 2019, I began to realize that my relationship with CF was changing. Although I still have to do daily treatments, attend regular appointments, and deal with ever-changing symptoms, much less of my energy is used up simply by existing with CF. My health is more stable than it’s been in a very long time. I am making improvements I never expected to make. My daughter has witnessed these changes, and we’ve been able to celebrate them together. It has truly felt like a miracle. 

Sometime last year, I awoke one night in a panic, paralyzed by the realization that I only have five years before my daughter will graduate high school and potentially move away. This was followed by the realization that I’ll be here for that milestone! As she gets older, she naturally needs me less — which I know is a good thing — but the sudden awareness of how quickly time is passing genuinely horrified me. What am I going to do with myself when she is gone, I wondered.

That single, panic-induced question incited what can only be described as a months-long process of reevaluating everything I thought I knew about my life (a process I am still in the middle of). For the first time, I feel like I can reasonably expect to live to an advanced age, however, I have failed to plan accordingly. Up until just recently, I never considered retirement or planning for old age. I didn’t continue schooling after earning my undergraduate degree because I never expected to be healthy enough for a career.
I no longer identify with CF the same way I have for decades, which in a way feels like I’m losing part of myself. My daughter is continually becoming more independent, and I can’t help but feel like another piece of me is fading away.

Even good change can be difficult to cope with, and I’ve been dealing with quite a bit of grief as these aspects of my identity are changing.

When I’ve spoken about this with friends in the CF community, I’ve been assured that I’m not alone. It appears that many of us who’ve benefitted from Trikafta are experiencing similar thoughts and feelings. Our expectations, hopes, plans, and needs are all changing. It only makes sense that we’ll be feeling our souls stretch to accommodate all of that. We are collectively going through a massive shift. I believe it’s OK — necessary even — to allow ourselves to sit with and truly feel the multitude of emotions that we’re experiencing. 

What comes next? What does life look like as we move through this unknown territory? How do I plan for a future I wasn’t sure I’d have? What does it mean for me as these parts of my identity change? I don’t know the answer to those questions, but I do know that I’ve trusted myself and the support of my loved ones enough to get this far and I think it’s a good plan moving forward. 

I recently decided to go back to school. I’m in graduate school, pursuing a master’s degree in social work. I want to have a career, to use my skills and knowledge to help others. 

I take heart in the fact that I get to watch my daughter grow and become a whole person with passions, interests, and ideas of her own … independent of me. As CF takes up less of our focus, my partner and I get to explore what that means for our relationship and our future together. Sure, I’ll need to start learning about things like retirement and a 401(k), but those are stressors I consider myself very fortunate to have. 

There is space for gratitude, fear, anxiety, indecision, grief, and happiness to exist together. I’ve never been more confused about my place in the world, more apprehensive about moving into the next chapter, or more uncertain about what creating a future looks like, but I’ve also never been more excited to find out. 

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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Jenny was tested for CF and diagnosed at birth following the diagnosis of her two older sisters. Jenny is passionate about raising funds and awareness for cystic fibrosis, and she helped form the foundational Patient and Family Advisory Board at her CF care center. She is in graduate school pursuing a master’s degree in social work. Jenny lives in central Utah with her daughter, fiancé, and an ever-growing zoo of animals. Jenny writes about motherhood, living with cystic fibrosis, and more on her blog Lungs N' Roses and she can be found on both Instagram and Facebook

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