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Coping with CF One Mile at a Time | My Cayston Community™
I was 4 years old when I was diagnosed with CF. My parents taught me that it meant I was still a normal kid, but would have to work harder to keep up with the other kids. They didn’t limit my activities or tell me I couldn’t do anything because I had CF. Thirty-four years later, I've done quite a few things. I’m an assistant district attorney, I have a family, and I am physically active. In the last few years, I have participated in a number of running and biking events, and I've hiked in some of the most beautiful places across the country. I also helped develop and write the Cystic Fibrosis Foundation (CFF) Guidelines for the Screening, Treatment, and Prevention of Depression and Anxiety.
The CFF Guidelines were developed after research found that people with CF and their caregivers have an increased risk for both anxiety and depression. It is not surprising to anyone with CF that both of these conditions can make it harder to adhere to our daily regimen of CF medications and therapies. I accepted the opportunity to participate in the groundbreaking work of encouraging the integration of mental health screening into CF clinic visits because of the large unmet need for mental health care among people with CF. I also chose to be a part of this because I felt that my educational background and life experience growing into adulthood with CF would bring a unique perspective to the committee.
My life is fuller, I am more driven, I take nothing for granted, and I am a more intentional person because of the challenges life with CF has placed in front of me.
As an adolescent with CF in the 1990s, mental health was not addressed in CF clinics. Adult clinics were only beginning to be established, and most pediatric CF clinics in existence at the time were not well equipped to handle the adult issues that their patients were dealing with. I was uncertain about my future and afraid that I might not realistically be able to achieve all that I wanted to in my personal and professional life. These uncertainties and fears were constantly on my mind.
In my late teens and early 20s, I resisted taking some treatments, not because I couldn’t accept the idea that I was sick enough to need them, but because I felt that needing them represented failure on my part. At the time, I felt my clinic was not the place I could express these feelings very well, though I have to acknowledge my own unwillingness to reach out in that way. The current Mental Health Guidelines seek to change that culture. Honest conversations about how someone is feeling must be welcome in CF clinics.
I was very fortunate. The same young adult who was struggling with a lot of anger, uncertainty, and fear about the future also happened to be a runner with a lot of support around him. In my teens and early 20s, running was often the only thing that motivated me to adhere to my treatments. Tying my adherence to something I was passionate about helped me stay on track. Without that, I am not certain I would have been so structured in maintaining my treatment regimen, or so willing to avoid making poor choices.
Today, twenty years later, I am still using exercise to manage the anxieties and fears that accompany life with CF. Every year, I register for 3 or 4 events that require consistent training. Each event becomes a celebration of my continued ability, regardless of where I finish. Riding long distances, I’ve learned to never look at my bike computer telling me how far I have gone, or how far I have to go. It’s not really helpful to contemplate the miles I have ahead or behind me. Instead, my Garmin shows me the course a few miles at a time. I can handle that. The beautiful scenery helps, too.
Is living with CF any different? Is it really helpful to count up the hours of treatments, the numbers of pills, the days or weeks on IVs or in hospitals? For me, those calculations are daunting, so I just take it day by day. I know what I have to do today, and look only far enough ahead to foresee any challenges that might make tomorrow difficult.
Acknowledging your fear is critically important. It’s a valid response to life with a chronic progressive illness, and tamping it down and ignoring it does not resolve it or make it go away. Knowing when to ask for help is a critical part of managing life with CF. This help may take a variety of forms. A change in physical symptoms, such as sputum production, shortness of breath, or increased cough, may require a call to one’s clinic for a PFT and a conversation about current treatments. Asking for help also includes evaluating how well one is coping with the mental weight of living with CF. Life with CF can be very hard emotionally, and recognizing that is not a personal weakness or deficiency. Changes might include feelings of deep sadness, being overwhelmed as if trying to juggle too many balls in the air, or an ambivalence to life and things that once brought joy. Depression and anxiety occur within the CF community, among both people with CF and their caregivers. Recognizing increased symptoms of anxiety or depression and acting on them is as important to one’s self care as recognizing your worsening respiratory symptoms. Being able to talk openly with members of the CF care team and those close to you about these changes if and when they occur are important skills to foster.
Life with CF can be very hard. It is healthy to say that and acknowledge the challenges. It is also healthy to focus on the positives. My life is fuller, I am more driven, I take nothing for granted, and I am a more intentional person because of the challenges life with CF has placed in front of me. Having CF has driven me to make the most of my talents and abilities for as long as I have them, and for that I am thankful.