Growing up with a chronic illness like cystic fibrosis has always bordered on terrifying, which is something I hadn’t quite come to terms with until recently. How does a kid respond to concepts of mortality and suffering, anyway?
Parents of kids with CF often try to shield their children from these realities as best as they can, but from my experience, I was always very aware of the daunting realities that could come from cystic fibrosis, even if I couldn’t quite contextualize them.
I say I was aware of them because I had been exposed to horrendous experiences from a young age. However, from those experiences, unbeknownst to me, I started developing my coping mechanisms and my ability to self-advocate. Coping mechanisms are strange, and I don’t think they should be labeled as good or bad, but the underlying emotion that dictates the behavior should be unraveled. My coping mechanisms would label me as a star patient and would provide me a foundation on which to improve my health.
My coping mechanisms were largely founded on two emotions: fear and anxiety. And that anxiety manifested in a need for control in three important spaces in my care:
Compliance with my treatments
For me, this had been a tangible way to manipulate or try to manipulate my lung health. In my mind, compliance was a way to put off sickness or slow down the deterioration of my lungs. However, I was also aware of how inevitable sickness is, so compliance alongside exercise could support my body and create a foundation. When I did get sick, I could use my body as its own fallback, and there was a satisfying safety in knowing I did all I could.
Of course, while deep fear has driven me to stay uber-compliant, I also am a conundrum, and I’ve found myself skipping treatments. That often renders me to be full of guilt, which is a topic I should flesh out with my therapist.
My disease is intimidating. Heck, even the name cys-tic fi-bro-sis sounds scary. When I was younger I didn’t have control of how scary CF could be (I still don’t have that control), but I could try to understand the complexity of my disease.
Understanding it meant being able to visualize what was unfolding in my lungs, why it was happening, and using this information to grasp what my medications, nebulizers, and treatments were trying to do. Understanding cystic fibrosis at the physical level was, and is, important to me, and now that I’m a little older, I’m learning to understand its influence on my state of mind and sense of self, which is a totally different column for a different day.
What I didn’t realize I was doing as a child, teenager, and young adult was simply developing not only my coping mechanisms, but also my voice and my ability to self-advocate, which is where my care team comes into play as both a way to ease my anxieties and to collaborate with me as an advocate.
Forming relationships with my care providers
From when I was diagnosed at 9 years old, I saw my care providers as my strongest allies against, well, the natural course of a genetic mutation.
Having cystic fibrosis, it’s not unusual to develop strong, family-like relationships with your doctors, nurses, respiratory therapists, and anyone who may work in a hospital. And for me, it was particularly important to cultivate these relationships, because I was afraid and I knew these people could not only soothe my anxieties, but also help me best live with my disease.
Through my relationships with them, I learned how to express my anxieties, overcome shame in asking questions, and ultimately best advocate for myself. I’ve had the luck (maybe?) in having doctors who genuinely want the best for me, and because of their support, I’ve found my ability to advocate for myself, especially when doctors haven’t listened to me.
In a lot of ways, what I’ve described are strategies in combating illness and disease, or perhaps crummy life circumstances. I call them coping mechanisms largely because they were bred from my own fear and anxiety that cystic fibrosis provoked. In this column, I have been using past tense, because while I still am very compliant, that element of anxiety isn’t quite as profound as when I was younger.
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.