At 40 years old, I was told I had cystic fibrosis and was lucky to have been so healthy. As the test results and statement marinated, my mind surged with emotions. I tried to pinpoint how I felt, but all I could think of was, "What luck?" Managing frequent sinus and respiratory infections along with gastrointestinal issues did not seem so healthy to me. Health was my life's nemesis! Nowhere in my medical record was there a four-leaf clover, and getting diagnosed with cystic fibrosis is not a pot of gold to go in search of.
My family was introduced to cystic fibrosis in the late '80s. My cousin, Marlene, was diagnosed as a baby. Being 12 years older than Marlene, I watched her grow into a beautiful 28-year-old woman who battled CF every day as a warrior does. It was only months after my diagnosis that Marlene passed away due to complications from CF. I was in a grief-stricken state, and disbelief in my diagnosis grew.
For months, a perpetual mental tantrum played out in my head. It was like I reverted to a toddler's mind. I questioned everything. I was desperate to protect what was mine: the vision of what my life was and how I planned for it to be, neither of which included cystic fibrosis.
I hated this horrible disease for how it made me feel and for what it made me think. I resolved not to let it affect everything important to me or let it near anything that I loved. I delicately compartmentalized my life and secretly surrendered to denial.
I wanted control over my grief. Unconsciously, I built a barricade between me, the person, and me, the patient. My compartment plan allowed me to retain my life and identity as a mom, wife, and professional, separate from CF. I thought that by confining CF, I could successfully control the distress it causes. I found out differently. At times, CF jumped the barricade and went freewheeling through my life. The very existence I created to survive was breaking down, and I was exhausted.
From the start, I faithfully went to clinic appointments every three months. The care team took an active interest in learning about me beyond CF. More than a great rapport blossomed; trust was built, and a relationship formed. On several occasions, CF-related information and materials were offered. I typically declined, except once. There was a virtual conference that had some fascinating topics, plus family was also welcome. For me, this seemed like a perfect opportunity to finally bring segments of my life together.
I told my husband about the conference. He was interested in attending and wanted to learn more about CF. We each registered for breakout sessions that individually appealed to us. The virtual space was supportive, informative, and educational. After the conference, we debriefed on what we learned during the sessions. We both agreed the conference was inspiring. As we wrapped up our conversation, my husband had one last observation to share.
He said, "I'm curious -- why do you introduce yourself as a patient with CF, and not just, 'I have CF'?" Right then, my denial was exposed.
Thinking that I could put CF in a box, along with my feelings about it seems silly. Getting diagnosed with CF was an aspect of my life I just wanted to avoid. It hurt, but the only way I could heal was to face what needed to change. By acknowledging my denial and facing reality, I regained the courage to discover new possibilities.
I renewed my life's purpose to community service and my belief that everyone deserves to be well and empowered to thrive. Going through this process revealed the meaning in my diagnosis; it enabled me to get involved and deepened my commitment to helping others. I am excited to fundraise for the annual Great Strides Walk, along with participating in CF FamilyCon, CF ResearchCon, advocacy alerts, Community Voice, and the community blog. I joined my CF care center's Patient-Family Advisory Board and Quality Improvement Team. I am also privileged to be a member of the Compass Advisory Board and its mission to help all people with cystic fibrosis, their families, and their care teams with insurance, financial, legal, and other challenges related to life with CF.
Sometimes, I reflect on the day I learned that I had CF. I still have mixed feelings about the diagnosis, but it helps to remember I was born with CF. It just presented later in my life. I do suppose there is a bit of luck in that!
Interested in sharing your story? The CF Community Blog wants to hear from you.