Cystic fibrosis (CF) is unpredictable. Some days I feel like I can run my fastest personal mile, and on others I feel like I’m staring at the treadmill waiting to hit my goal distance. I’m a person who likes to find patterns in things — from patterns in the weather, or what stoplights get super congested at what time, to my research as a scientist. In part, I think this is largely due to my training as an engineer.
As an engineer, we learn to find trends and to analyze data at incredibly high levels. However, no matter how good I become at recognizing patterns, CF will always beat my prediction.
Don’t get me wrong; those of us with CF learn to recognize the signs that we’re getting sick. Sometimes it’s easy to know when we need to start upping treatments or ask for additional therapies. But often, there are times when obstacles and health challenges come out of the blue.
This week for me falls into the category of unpredictability; it’s both physically and mentally draining. It’s a time when I feel fine, but my body acts another way, and I start to find instability. Anxiety begins to creep in and I let it get the better of me. I have a bad habit in times of stress, which leads me to pushing others away. I know it’s not healthy but I keep my significant other, friends, and family at arm’s length because I assume the CF journey is my own.
It’s natural for those in my life to worry about me. How can they not? When someone learns about CF, they can’t help but start Googling what the disease means — only find scary outcomes. The questioning starts, and it feels like the worry starts to come down on me. Every time I cough, I’m aware of their concern. It’s as if every action of mine could lead to a potential clue that rough waters are to come.
So, when things do get tough, I push away. I reduce my CF to a weakness. It’s my beast to tame and I want others to be unaware. I’m still not sure why I do this. I know these people care about me, and I about them. But seeing their concern and their emotional pain makes me feel guilty and powerless. My inability to take care of myself is dehumanizing, and I want to fight my battles myself.
This, in turn, can lead to more distress. My loved ones start to acknowledge my distance and intentional acts of isolation. I become aware of it and proceed to spiral into feeling bad about my actions. Even the simplest of health outcomes can lead to these episodes.
I want to learn how to get better at letting others in, but I worry it may just be my instinct, or more broadly the default actions of humans. But I’m aware of it. So for those in my life reading this, I apologize. And for those in the lives of other people with CF who go through this, please understand and give us 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.