Recognizing the Ego that Comes with Having CF

I was diagnosed with cystic fibrosis in 1995, at only 3 months old. CF was still considered a child-killing disease, and this fact invited torrents of sympathy from family, friends and strangers alike. Because of this, I grew up feeling “extra special” to the outside world. The number of times I’ve been referred to as “strong," “a warrior," “an inspiration,” and “wise beyond my years” left me with a CF-related burden I never saw coming: a MASSIVE and UNBREAKABLE EGO.

The number of times I’ve been referred to as “strong," “a warrior," “an inspiration,” and “wise beyond my years” left me with a CF-related burden I never saw coming: a MASSIVE and UNBREAKABLE EGO.

Clearly, I know more about the world than most people. Clearly, only others with CF “get it." Clearly, my experience with battling an incurable genetic disease makes me more deserving of gifts and special accommodations. Any hospital selfie, mention of chronic pain, or nebulizer pic captioned “SO over it.” validates the fact that I have it worse. Oh, you’re diabetic? Well, guess what — I have CF AND diabetes. Oh, you lost your job? At least you CAN work; I’m sick all the time. And don’t you DARE suggest that I can improve my life with a healthy daily lifestyle. CF isn’t that easy!

...Okay. Did all of that make you cringe a bit? Me too. This is ego-speak.

A year or two into college, I found myself trapped in this self-centric view of the world. On the outside, I touted my CF story to “inspire” others. But on the inside, my mind still circled the same tired thoughts: “Why me?” and “People will never understand my pain." And boy was I emotionally EXHAUSTED all the time. Since then, I have made ongoing efforts to address my overly-inflated ego. One of the biggest questions I ask myself is this: What am I trying to prove? If this resonates with you, try to be more specific in your thought processes with affirmations like these:

● There are nearly 8 billion individual minds & bodies on Earth.

● My illness still exists even if I don’t talk about it.

● Close-minded people should be treated with compassion; all I can control is my own open-mindedness.

● It is a greater burden to be emotionally reactive to others.

● Most people have good intentions.

● I am not inherently MORE unique just because of my illness.

● There is so much that I don’t know.

● There is so much that I can learn if I just listen.

● The way strangers treat their body is none of my business.

● Other people’s opinion of me is none of my business.

● I am not tied to my ego; I am constantly evolving and open to new ideas.

But on the inside, my mind still circled the same tired thoughts: “Why me?” and “People will never understand my pain." And boy was I emotionally EXHAUSTED all the time.

The ego is a difficult & uncomfortable entity to address. And, it isn’t inherently the enemy. The ego gives us a sense of self & purpose. If given too much slack, though, our egos can be easily triggered by those with opposing views. We should strive to meet these people the middle, without snap judgements. Humans have so much more in common than we give credit for, and people are usually willing to learn if you let them. Instead of putting myself on a pedestal made of prescriptions and empty nebulizer vials, I choose to view the world with a wide-angle lens.

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About the Author Carly Lindmeier is a 24 year old with CF living in San Diego. Growing up, taking a multidisciplinary approach towards health gave her a well-rounded view of cystic fibrosis. At age 11, she was introduced to the healing benefits of surfing (a therapy she still utilizes today for both physical and mental health!). Through high school and college, she shared her story as a public speaker at events like Pipeline to a Cure in Huntington Beach, CA. After attending community college close to home, Carly decided to take a leap of faith into the unknown: a move 2500 miles away to upstate New York, with a new CF clinic, a new school, and a completely opposite wardrobe. In 2018, she graduated from Syracuse University with her B.S. in Communication Sciences and Disorders. These days, she lives close to the beach working as a Registered Behavioral Technician for children with autism. In her free time, she focuses on health, mindful self-improvement, embroidery, surfing, and of course, eating delicious food.