The Fear Of Missing Out: Forfeiting Rites Of Passage Due To CF
FOMO, or the fear of missing out, is a big deal in the cystic fibrosis (CF) community. It’s something I have struggled with through various stages of my life and periods of decline in my health. Whether due to sickness or focusing energy towards stability, missing out is painful in the present; but can also bring about many negative thoughts and worries about the future and what’s to come living with CF.
Conversations about the future
I feel like once I got to college and entered adulthood with further independence, FOMO from CF morphed into something more than missing social events or a night out as I detailed before. It also became a gray cloud over any talk about future plans, rites of passage, or ambitions I hoped to achieve. Rites of passage such as graduation, careers, marriage, creating a family, and retirement are typical events in a life course that are celebrated. But, they also were difficult subjects for me to speak about--rightly so.
There was so much uncertainty and what I would be able to accomplish before I got “too sick”, I didn’t feel a part of the conversation with my peers about the future. I often wondered: Would I still even be alive at that point? Would I be functional? What would my health look like?
I felt so left out because CF played a starring role in every milestone to come--slowly putting further space between me and normalcy. In a time of excitement, it was increasingly difficult to articulate what I hoped to do, but also what I fear would be the barriers or alter the way I experience those milestones.
Working and planning are gifts
For example, not being able to work a full-time career due to CF was (and still is) a difficult pill for me to swallow. (I swallow 50+ pills a day but I’m not sure I will ever choke that one down gracefully.) I know working full-time is not always sunshine and rainbows. It also can be the pits, but I wish I was able to have a more “normal” experience with working full-time, advancing in a career, and saving for a 401k plan without missing out.
As I enter my thirties, these milestones are so insignificant to my peers--and sometimes more framed as an annoyance. I struggle to find my place in the conversation because our experiences surrounding work have been so different. As well, I don’t want to be the Debbie Downer either. However, sometimes I just want to scream, “The fact that you can even hope to retire someday and can save for one--now that’s a gift.” Instead, I remain silent and wish I had the same abilities to plan for a future--comparing two incomparable experiences.
Ways to cope with FOMO from CF
There’s a famous quote by Teddy Roosevelt, “Comparison is the thief of joy.”1 Honestly, I think that guy was truly onto something. FOMO has the uncanny ability to consume my mental energy if I allow it and continue to compare my experiences with others. It’s taken serious intentionality on my own behalf to put this notion into motion in my life and learn to cope with the negative feelings of FOMO from CF.
In order to cope with the feelings of missing out on overarching and “typical” experiences, I have tried to use gratitude and reflection to change my own perceptions. A lot of the time asking myself questions about what’s going on internally helps to refocus how grateful I am to be doing what I do. It makes me realize how unique and special my experiences have been through adulthood--a mother with CF, a writer sharing her story, a supporting wife, etc. (It also reminds me how lucky I am to still be flipping alive!)
I don’t need to compare myself to others to see value in my beautiful life, and neither do you. Next time, you feel overwhelming FOMO creeping in on your mental health, stop and ask yourself the following questions:
- If I lived in a vacuum with no outside opinions and influences, what would I want to be doing?
- What can I do to enjoy this season of life more right now?
- What skills or understanding am I gaining from this different experience that I can share?
Do you struggle with FOMO about the future? How do you cope? Share your thoughts below with our community!
Have you (or a loved one) been experiencing any negative side effects from Trikafta?