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CF Familia

Facing the Diagnosis

by Alicia M.

Patient testimonials represent individual experiences and opinions of the individual patient. Experiences may vary.

In 2008, my son was diagnosed with cystic fibrosis (CF), the week he turned six years old. This was before the list of health conditions on the newborn screening list included CF. Facing a diagnosis is as unique of an experience as every individual who faces it. For me, facing the diagnosis has turned out to be a process that evolves as my son’s life with CF unfolds. Fourteen years ago, my son’s doctor called me on the telephone to confirm the official diagnosis, and facing it is what I have done and will continue to do every day since.

When he received the diagnosis no one in my family had ever heard of CF so my process began by researching what CF was and what caused it in my child. The more I learned about CF, the more terrified I became and the more questions I had. As I pushed for answers from my son’s medical team about how CF would impact my son and family’s future, it became clear that no one could give me the guarantees I desperately wanted to hear. I simply couldn’t find what at that time I felt I needed most, solid reassurance that everything was going to be okay, and a step-by-step manual on how to fix the problem and make CF go away. The weight of such uncertainty gave way to a shift in how I was to proceed with facing the diagnosis. It was a shift from gathering information to tending to my emotional needs. I had to find a way to process the overwhelming fear and sadness that came with a life-threatening condition for my child that no one could “fix.”

Determined to move ahead, I decided to seek caregiver support and discovered that I was not alone. Thankfully, the CF community includes a robust ecosystem of support consisting of dedicated doctors, nurses, specialists, researchers, pharmaceutical companies, support groups, and CF patients and their families. I began using the support resources for caregivers and building connected relationships with other members of the CF community. In receiving support from the CF community, I also found ways to give back as an active volunteer. Since then, I have remained consistently engaged in the CF community, which keeps me optimistically informed of the latest advances in treating CF.

Today, the daily process of facing the diagnosis remains as variable as whatever that day brings. However, my experience over these fourteen years has enabled me to develop skills of resilience that provide me with comforting reassurance that only I can provide for myself. In retrospect, I believe these four steps have made the biggest difference in my ability to face the diagnosis:

• Allowing myself time to discover how my unique process of facing the diagnosis would unfold; it is different for everyone.
• Allowing space for the uncertainty that the diagnosis entails; I will always have some questions for which there is no answer.
• Bringing awareness to how I’m feeling and seeking the support I need to tend to my emotional needs and other aspects of my wellbeing.
• Staying engaged in the CF community and focused on the progress made toward improving the quality of life for those living with CF.

I am grateful for the opportunity to share my experience with facing the diagnosis and for the benefits I’ve received from hearing the experience of others.