Full Logo-WHITE.png

Life With Cystic Fibrosis

Dealing with cystic fibrosis
Photo by @shannonchristinephoto on the Wild Sisterhood NYE Retreat

Imagine for one moment living a life where you have to be cautious of every single thing, because the risk of catching a life-threatening illness is a real. That’s exactly what life is with cystic fibrosis. This disease is invisible, and from the outside most people with this condition look pretty healthy. But, the reality is most days are filled with challenges; like wondering if someone with the flu touched the handle at the grocery store before you, or if the environment will cause some internal chaos. I’ve realized that I haven’t done a very good job at describing what a life with cystic fibrosis looks like, mostly because I don’t feel like focusing on the negative aspects of my life… but, for complete transparency here are a few hidden facts:

1. People with cystic fibrosis are the perfect breeding grounds for bacteria, fungus, and pathogens that healthy people don’t have to think twice about. For example, I have tested positive for multiple fungi and bacteria that decided that my lungs were the perfect place to colonize and call home (they don’t cause too much trouble, so I guess they can chill... for now) . Stagnant water and the some of the most beautiful places in the world, can literally kill people with this disease because fungus and bacteria love the dampness.

2. Chronic and severe pain is the reality for so many people living with CF. I have completely changed my diet to avoid anything inflammatory. And if I accidentally eat something that triggers my body to react in a negative way (like gluten or a nightshade vegetable for example), I can’t function for at least four days. Sometimes I will look fine, when in fact I’m in so much pain all I want to do is scream. The positive part of this fact is I have found so much healing in eating a nutrient dense diet, and truly believe that Mother Nature can cure all ailments. (have questions on a clean eating diet? Lemme know!)

3. Six feet apart – it’s a life-saving rule in the CF community. Remember that little fact how people with this disease can catch pathogens from the environment? Well, we can catch them from each other too. So most of us have never met someone with CF in person. If we do meet face-to-face we must wear face masks and be aware of the potentially life-threatening dangers.

4. I’ve saved a very exciting fact for the last, to end things on a positive note. Because our bodies have to work extra hard at you know, surviving… we burn extra calories and get to eat a LOT. So, let’s just say that I eat as much as my husband who is double my size. It’s a good time. And a very tasty one.

With all of this, it’s easy to live a life filled with fear. I know I spent more than a quarter of my life with terror as my main motivation. I would make choices because I was fearful of getting sick and dying. But I’ve realized that it’s more important to choose to LIVE. You can’t go through your life only thinking about dying. Trust me, I’ve done it… and it only caused more suffering. I still have my days where the anxiety rips through me and I’m left in a seeping ball wondering if I’m making the right choices. But, I’d rather live a life worth breathing– one where I feel fulfilled and know full-heartedly that I am LIVING. I've found that balance is the key. Yes, I have a challenging disease, but it has taught me more in my short life about gratitude and joy than most people

. Maybe I can’t go on a hike to see the waterfalls, but I can breathe and enjoy the life that I have. And that’s all that matters.

39 views0 comments