What I’ve gained from living with cystic fibrosis
This disease is challenging, but there are reasons to be grateful
In my last column, I wrote about the psychological aspect of living with cystic fibrosis (CF) that I dislike the most: the focus on shortened life expectancy. This week, I want to offer more of an optimistic outlook, as I try to find balance in all things.
It may be hard to comprehend how there could be anything positive about this horrendous disease. But there are two aspects of CF that I’m thankful for.
Living with gratitude
First, perhaps because we face a shortened life expectancy, those of us with CF realize that every single day is a gift. No one is guaranteed tomorrow, but most healthy people assume they have an entire lifetime ahead of them. Living with this rare disease causes us to face our mortality and life’s fragility early on.
This perspective leads me to practice gratitude. Being so aware of my shortened life expectancy forces me to live in the moment and not take a single day for granted. That’s where I choose to focus my thoughts, actions, and energy each day.
My pulmonary exacerbations began in my mid-20s. As the years went by, the exacerbations became more frequent, and my medication regimen became more involved. By my early 40s, poor lung function had me struggling to keep up with my job, motherhood duties, and household chores.
As my CF became more severe, it became clear that each day is a gift. I was sedentary during this period, so I had a great deal of time to reflect.
Facing mortality in any situation is a life-changing experience. With CF, I learned how to fight for my life and cling to hope. As my health declined, I pinned my hope on new treatments being made available for CF patients who, like me, have rare gene mutations.
I ended up needing a double-lung transplant to survive, so any exciting new treatment possibilities would be too late for me. But enduring that extensive surgery brought the fragility of life to the forefront — not only for me, but also for my daughter. Although I believe that living in gratitude is lost on our fast-paced culture as a whole, having a terminal or life-shortening disease like CF teaches us the preciousness of time.
Living with cystic fibrosis is a daily struggle, both physically and mentally, but with the mindset that each day is a gift, we can be more present and appreciative. Staying in the moment also can help decrease stress, depression, and anxiety, which are common among those of us with CF, given the instability we face.
Many people don’t learn these lessons until they’re much older, if ever. I’m thankful to have realized the preciousness of each day at a younger age than most. It makes me kinder toward myself and others, and it makes life more fulfilling.
Forging friendships
The second thing I’m grateful for is the ability to connect with others living with cystic fibrosis. It’s changed my life in many positive ways.
Although our friends and family witness us battling this disease, no one truly understands it as well as another walking the same path. As I’ve met and forged friendships with others in the CF community, I’ve been so impressed and inspired by their fortitude, grace, knowledge, and passion. I’ve grown from watching their journeys, even if it’s over social media.
Through discussions, panels, and virtual events, I’ve learned about vulnerability. I didn’t really work on this area in my younger years. But through the CF community, I’ve learned how therapeutic it is to face my inner thoughts and feelings with love and acceptance. These individuals have also taught me more about courage and advocacy — attributes that have acutely enhanced my self-awareness, inner voice, and communication with my care team.
Beyond that, the CF community is filled with so much talent and knowledge. The people in it are amazing, motivating, and in tune with what’s truly important in life. They’re true to their hearts and support and uplift one another. They’re the strongest fighters I’ve ever seen. They strive to make things better for the next generation of those diagnosed with CF.
Bottom line: If I had to have been born with a disease, I’m thankful and honored it was CF. I truly feel privileged to stand alongside such a beautiful group of souls.
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.
About the Author
Kay
Hi Jennifer - I too am in the rare category. Every morning I thank God that I'm still alive and I didn't start spiralling until I hit 50yrs old. Boy was that a ride!! So many life lessons in such a short period & of course a sadness that lots of my symptoms were ignored or I was blamed. It is so easy to blame the patient... and of course I feel the Queen of Misdiagnosis.
In Thailand, at the Bridge over the River Kwai there was a museum many years ago. It might still be there, I don't know. I was probably about 27yrs old and I saw the words, "Forgive but do not Forget". They apply to my situation.