Finding My Truth: Learning to Cope with CF

My struggle to cope with my CF brought me to some dark places. The support of my care team helped me come to the light.

| 5 min read
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Sydney Sabol
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Growing up is scary, embarrassing, complicated and emotionally draining. Add cystic fibrosis into the mix and it stirs up a whole new recipe for psychological discord. Being a teenager with CF is isolating. I was subject to the same mood swings as any other 16-year-old, but mine were often about making time for treatments, remembering medications and trying not to have a coughing fit in front of my peers. Eventually, my mood swings and inability to feel understood prompted me to drop out of high school and venture down a path of addiction.

As someone who never met anyone else with CF in person, I turned to online forums to better understand my issues. Finding information on nutrition and airway clearance was easy, but finding information on overcoming temptation was another untold story. Around age 16, I started smoking marijuana every day, and by 17 I had experience with prescription pills, psychedelics, stimulants and just about anything else I could get my hands on. I knew I couldn't have been the only rebellious patient, and my inability to find others within the community with similar issues became frustrating. At a routine check-up in September 2013, my lung function had dropped 30 percent and I had lost more than 20 pounds. Until then, I was able to hide much of my life from my care team, but the consequences of my actions finally caught up with me and I was admitted to the hospital for two weeks to treat infections.

Initially, I was angry and ashamed. Seeing my blood test results, the first thing my doctor commented on was all of the THC (the intoxicant in marijuana) in my system. On top of that, the nurses kept noticing and asking me about my self-harm scars. All of my secrets were exposed, and I had never felt like a bigger disappointment. I was on intravenous fluids, oral medications and nebulized treatments every four hours. My sense of self was stripped away to reveal a scared 17-year-old who knew she had to take better care of herself or she would die. 

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Doing my vest at Nemours Children's Hospital in Orlando, Fla.

Watching the care team dedicate their days to my well-being catapulted me toward a huge spiritual awakening. Never in my life had I been surrounded by a group of people so unconditionally caring and supportive. Despite my stubborn behavior, the team came together without judgment to provide me with the utmost care. This struck a chord in my heart and slowly my emotional baggage began to lighten.

I met with a child psychologist, which allowed me to address some CF-related fears, and I learned a lot about my emotional health. Before that, I never properly addressed my fears. How do you find the words to express your fear of dying? Your fear of not getting to live as long as your peers? Your fear of not meeting personal milestones like college graduation, traveling to exciting destinations or marrying? 

My inability to open up within the community led me down a destructive path of resentment, anger and insecurity. In hindsight, I was just a girl trying to stuff as many experiences as possible, good or bad, into what I perceived might be a short life.

Luckily, my hospital stay enabled me to dive deeper into myself, admit my fears, live my truth and uncover the beautiful woman who exists beyond the CF.

By the end of my visit, my lung function, weight and overall health had skyrocketed. My desire to love myself overcame my desire to escape. I vowed to put my health and well-being above all else, including momentary temptations driven by fear.

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Feeling beautiful and happy at Awaken Hot Yoga in south Florida.

I am now a healthy young adult in college with a lung function of 70 percent. I eat like there is no tomorrow, practice yoga and strive for enlightenment. The idea of doing drugs makes me sick to my stomach, and I do not condone their use. I do, however, condone talking about it.

Opening up discussions within the CF community about fears, temptations and urges allows us to ditch the journey toward shame and move toward emotional well-being.

I am incredibly honored to have had such a profound journey, and I can't wait to see where my love for life takes me next. For the rebellious people with CF who are struggling with addressing fears and finding peace, I dedicate my words to you. May we all have the courage to confront our fears within the community and share our experiences doing so, for this disease is not just an excuse to be strong for ourselves, but for others as well.

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Emotional Wellness
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Sydney is a young adult who was diagnosed with cystic fibrosis at birth. She is currently pursuing a bachelor's degree in English at Florida Atlantic University and aspires to be a writer and motivational speaker. In her spare time, Sydney enjoys studying astrology, practicing yoga, and projecting peace and love outward. Sydney can be found and contacted via Facebook.

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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.