Cystic Fibrosis: Simply Surviving

Sometimes I want to scream to people, “YOU DON’T UNDERSTAND!”

Every so often, someone will send me a link to a news article or blog post about someone with physical impairments doing amazing things – a marathon runner with artificial legs, a blind skydiver, a model with a colostomy bag. The moral of the story is usually something akin to “they never gave up” on their journey to achieving their personal dreams despite what most people would consider a disability or limitation.

Politically correct language has replaced the word “handicapped” with “handi-capable,” with the aim to see the person before the disability.

The message of such stories is clear – we (you) can overcome anything if we just work hard enough. It’s a lovely sentiment. I’m a huge proponent of positive thinking – in fact, I practice meditation, visualization, and even self-hypnosis with that goal in mind. While I appreciate the sentiment of encouragement that seems to be behind sharing such stories with me, I feel like I need to clarify why living with Cystic Fibrosis is different from living with a functional impairment.

Please understand that I am not discounting such amazing achievements. I am not saying that people with CF are “worse off” than anyone else, but our challenges are different.

Imagine having symptoms of the flu, a hangover, and food poisoning on any given day of your life.  Imagine that you need medications and treatments several times a day to accomplish basic tasks such as breathing and eating. Simple acts like walking up a flight of stairs or running errands requires a recovery period. You have pain every day, and it could be from your lungs, your gut, your pancreas, kidneys or your liver, with perhaps more than one organ flaring up at once.

Now imagine trying to talk your body into “doing anything you want to do” on any given day while experiencing those symptoms. Cystic Fibrosis is all-encompassing, completely consuming.

I frequently hear the phrase “special needs” to describe anyone with a chronic condition that requires accommodation. Unlike a young woman without arms who learned to fly a plane, it’s difficult to make permanent (or long-lasting) accommodations for all of the things that CF does to a body. Aside from wearing Oxygen, there are no assistive devices that even the playing field, and despite surgery or even a transplant, we’re simply buying time. (Check out the video I created which explains how my CF affects me.)

I can’t put Cystic Fibrosis a in the same category, because CF is not a functional defect that can be overcome to a relatively “normal” capacity.

Living with CF is a journey of simply trying to survive.

Living with CF, I certainly utilize every coping mechanism I can master, learn everything possible about the disease, take every medication and do every treatment designed to increase quality and length of my life, but I will never overcome CF. I know that everyone dies at some point, but for most of us with CF, the aging process and deterioration of most of our organs are put on fast-forward.

Now, that’s not very uplifting, is it? I apologize. This all sounds really negative. But when I read these stories, I hear the implication behind the gesture – “Why can’t you do that?” “Why don’t you do that?”

Invariably, anything I say may end up sounding like just an excuse. I then question myself. What is the difference between and excuse and a reason? Am I doing enough to keep CF from getting in the way? Is it simply a lack of motivation, or a quitter mindset? My biggest wish is to live a life not just surviving, but thriving (sorry for the cliché).

I hate Cystic Fibrosis.

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