Trauma and resilience are 2 sides of the same coin in the CF community

Living with cystic fibrosis (CF) feels like riding on a never-ending roller coaster. There are highs and lows, unexpected pitfalls, and twists and turns around every corner. Like a roller coaster, the paroxysmal journey of CF leaves us feeling ill much of the time. But life moves forward, and whether we’re sick or not, we must move ahead with it.

CF has abruptly changed my schedule and plans too many times to mention here. Acute pulmonary exacerbations, bowel obstructions, kidney failure, and dehydration episodes that appear seemingly out of nowhere cause me to drop everything in my life at that moment to get treatment and rest. This is the nature of CF, over and over and over. We patients know it all too well.

CF could easily pummel us to the ground, both physically and mentally, if we let it. Although there is time for anguish and even despair at times, when you face a lifetime of this sentence, the only option is to find a way to cope and keep fighting. At some point in the journey, resiliency is born.

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What resilience looks like

Many people without health issues have experienced challenges and difficulties, thus becoming more resilient. They bounce back stronger due to the tough situation they’ve experienced. Many of these people may have even had a traumatic experience and were able to mentally and emotionally cope and adapt, making them more resilient. It is viewed as a strength, and I agree. When living with cystic fibrosis, this is a constant cycle.

I recently stumbled upon the term trauma resilience, which resonates with me. We CF patients constantly must withstand physical, mental, and emotional trauma, along with multiple medications and their side effects, knowledge of a shortened life expectancy, continuous doctor appointments, endless procedures, hospitalizations, surgeries, and organ transplants. Even financial trauma can happen, with the stress of how to cover exuberant health insurance costs and copays. Worst of all, we must watch CF take the lives of others in our community. From childhood to adulthood, these things fill our lives.

These traumas not only affect those living with CF, but also everyone around us, including our parents, grandparents, siblings, spouses, children, friends, and even our physicians and others on our medical teams. Each of these perspectives is different, but everyone who cares about us witnesses our traumas and is affected to some degree. CF causes a domino effect and is brutal on everyone involved.

With that said, how we come together as a community and support one another is utterly remarkable. I see it every day on social media, and it touches me deeply. There is never an unkind word, only support. People share resources for all of our family members. Much of it originates from the CF community itself, with the goal of helping one another. These resources continue to multiply as more people realize how long CF’s tentacles are.

I am thinking about the resilience of our community this month because May is Cystic Fibrosis Awareness Month. I am in awe of how this community as a whole shoulders this burden. Being able to cope and move forward in the face of trauma is what we do.

I am eternally grateful for each and every one of you, as this community is the backbone of my own trauma resilience.

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.