A strange reality of living with cystic fibrosis (CF) is that we’re usually the only person with the disease we actively, directly engage with, aside from maybe siblings.
The many aspects of routine CF care — preparing medications for the week, reconstituting antibiotics, Vest treatments, sterilizing nebulizers, IV antibiotic administration, coughing throughout the day — can emotionally overwhelm because it feels like we are the only person experiencing this life. When comparing my life to those of my peers, it’s hard to fathom living without daily treatments and exercise, where my lungs are just … healthy.
What does it mean to be “normal”? I’ll start by saying that I don’t like this word, because it implies that such a thing exists — a “normal” existence. But what is considered normal? Not having a chronic disease? Going to college? We can delve deep into statistics and find the most common path someone may take and decidedly call that “normal,” like a baseline. But what good does that do?
To view life as what it should be is to view life as predictable. With or without CF, life is unpredictable. For example, sure, people with CF are more likely to be affected by a virulent strain of the flu, but the flu can be devastating for anybody.
In my younger years, I was bitter about having CF. It didn’t seem fair for me to have to worry about things that nobody else had to worry about. I don’t feel that bitterness anymore. Thinking about what life would be without CF doesn’t make things any better.
I’ve also gotten better at resisting worry over the uncontrollable parts of life. This doesn’t mean that I don’t worry about antibiotics or getting sick, but I try to frame my worries in a way that makes me feel more comfortable with knowing that I can’t control everything. I’ve struggled with anxiety and depression over the years, so health concerns have been a big part of my life for as long as I can remember. I’m fighting a constant battle to mitigate those worries.
A life of “normalcy” is the life that we come to know; the life that we choose to embrace. At times, I get upset when taking a step back to look at what my sister Alyssa went through and what I have to go through just to maintain my health. In these times, I wish I didn’t have to worry about infections or chest pain or doing my treatment. But without these experiences, I would not have learned many life lessons at this age. Living with CF has taught me deep-seated empathy; that people have far more going on than what we see on the surface.
In sum, I don’t believe in a normal path in life. We all have different concerns, but most of us have similar ones, and we can relate to each another. If having CF and feeling like I wasn’t “normal” while growing up has taught me one crucial lesson, it’s that the most important thing we can do is try to empathize with others going through a hard time.
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 Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.