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*The CF Roundtable does not give medical advice. Any medical opinions represented in these articles are those of the writer and do not represent the views of USACFA, any of our community partners, or any other group or individual. We strongly suggest you consult your doctors regarding any medical references and before altering your medical regimen in any way. USACFA does not endorse any products or procedures. 

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© United States Adult Cystic Fibrosis Association 2019

don't focus on the numbers; mental health and cf, an altered perspective

As I’ve gotten older, the effects on my mental health from having CF have become more pervasive, and it has now become something I’ve had to learn to manage with a similar sort of dedication and attentiveness as I do my physical symptoms. I was very fortunate for most of my young life to live what I used to call a “normal life.” When I was diagnosed at the age of three, my parents decided that they were not going to raise me in a bubble. I believe that played an integral role in my psychosocial development and allowed me to have a childhood free from self-labeling and seeing myself as different from my peers. What made this mindset easier at the time was that my physical health was more or less unaffected by the disease. Aside from taking enzymes and doing treatments, my quality of life was not all that different than that of my peers.

As a freshman in high school, I acquired my first road bicycle. With the encouragement of my aunt (an avid cyclist herself), I decided to make the sport a commitment by creating a fundraiser for the CF Foundation. It was known at the time as “Dave’s Cycle for a Cure.” I was fortunate to have a wonderful support group in my family, friends and the local CF chapter. The framework for the fundraiser was that of a letter writing campaign wherein I shared the practical realities of living with CF, the need for continued donations to help find a cure and the prospect of being able to “save lives one mile at a time.” Each year, from 2004 to 2008, my family and I organized a multi-day cycling tour each summer in various locations across the country. In return for all of the gracious donations that we received, we would blog our often whimsical journeys for the entertainment of donors and to document our efforts. This was also in the days before blogging was “hip,” as it is today. The overall effect of conducting this fundraiser over several years was raising hundreds of thousands of dollars for the CF Foundation and receiving awards and accolades for having done so. Although this work was incredibly gratifying, I am not sure that I truly grasped the scope of it all throughout. I was proud to have accomplished such a feat, but I also felt that my struggle with the disease was not nearly as difficult as others’.

I would frequently receive comments and letters from donors and others commending me on my efforts and telling me how inspirational I was. I felt undeserving of said praise because, frankly, it was relatively easy. Then, between my senior year of high school and my freshman year in college, my lung function dropped from 108 percent to 67 percent within a period of about three months. What happened? This drastic decline shocked me. Up until that moment, I had not had to overcome significant adversity with regard to my CF, and I was in no way prepared, despite all of my purported strength, to handle the emotional and mental effects of such traumatic news. In very short order, my thoughts became dominated by fears, uncertainty and doubt. I was finally confronted with my own mortality.

Throughout college, most, if not all, of my decisions were subconsciously influenced by my fears of mortality. Instead of approaching life from a perspective of abundance and love, as I had done in prior years, my approach to life and living became one of coming from a place of lack and of fear. Rather than living life intentionally, I went into auto-pilot and was just going through the motions – just doing what I was supposed to do – school, work, treatments, medications etc. I was in denial, and my coping mechanism was to seek perfection in all aspects of my life. This pursuit, however, led me to a perpetual cycle of dissatisfaction.

After graduating college and being in the professional world for a couple of years, at a routine clinic visit, I cultured a bug that I had not ever cultured before. I was told that the treatment for this infection would be long (potentially years, including IVs), difficult and possibly unsuccessful. Unfortunately, my care team at the time was not equipped with the knowledge or skill set to treat me, and there was no standardized protocol for doing so at the time. I began a prescribed therapy and got worse and worse. Within a couple months of starting therapy, my lung function proceeded to drop from 67 percent to the low 30s. It was at that moment that after years of denial and putting on an emotional facade of being “okay,” I lost it. I broke down in front of my doctor, feeling more hopeless than I had ever felt in my life. After resisting taking mental health medication for my entire life, in that moment, I surrendered.

With the help of medication and therapy, I slowly began the process of acceptance. I made great efforts to internalize the mantra, “Life is not a sprint; it is a marathon.” In other words, it did not matter how fast I got to the finish line. What was more important was that I was able to endure. I started to accept the fact that, ultimately, I was not in control and that my disease had become a part of my identity, and that was okay.

I made efforts to rekindle a sense of joy, optimism and strength in my life, but there were still unresolved emotions. Particularly, I harbored feelings of being less than worthy of being loved. My peers were fostering very successful careers, getting married and starting families. For me, however, being compliant with my treatments, getting rest and avoiding acute illness were my top priorities. The difference in the way our lives looked was a stumbling block for me. As Teddy Roosevelt once said, “Comparison is the thief of joy,” and I found this to ring true most of the time. I had to learn to be gentle with myself. When in community, I allowed myself to be vulnerable with everyone about what my life looked like with CF. I made them aware of why I made the decisions I made and the struggle of self-care (mental and physical). In so doing, I began to find that “Those [people in my life] who matter don’t mind, and those who mind don’t matter.”

One piece of advice that has always stuck with me came from one of my past CF doctors who told me, “Don’t focus on the numbers [referring to my FEV1]. The numbers are only a small part of the whole story. What is important, however, is whether or not you are able to do the things you love with the ones you love.” What a wise old sage. I have spent too many years in my short life focusing on the numbers, letting them consume and define me and my ability. I hope that you do not do the same. Life is for living. You are worthy; you are stronger than you think you are, and you are loved. 

David is 29 and has CF. He lives in Erie, CO. You may contact him at dtarnow@usacfa.org

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