CF Changes You from the Inside Out
There is one conversation that repeats in the CF community that always makes me stop and think about my life and those around me who also fight the same disease. In general, I think this particular rhetoric is meant to be uplifting and inspiring, highlighting the strength of the CF community. However, when people talk about “having CF, but CF not having them” it makes me shrug my shoulders and think, “I don’t feel that way.”
I say this because the progression of CF is a powerful motion that sweeps you up even when you try to desperately fight it. Truthfully, there’s a lot of moments where I don’t have CF; it has me in its grips. It occupies my time, drains my body, rattles my mind, and has the power to change me from the inside out . . . as it’s done for the past 30 years.
The change on the inside
As CF progresses, you get to a point where you can’t separate CF from the other parts of your life. They are all intertwined in some tangled up and messy way. This doesn’t necessarily mean it’s a negative thing. In fact as cheesy as it is, I look at it as something that’s influenced the very core of who I am. As my body has gotten sick, I have had an opportunity to understand a small piece of the different internal struggles and mental states people deal with on a daily basis. My own growing empathy is one change I am thankful for as my CF has progressed over the years. My eyes have been opened to others’ vulnerability that I may have not understood without challenges of my disease.
Battling mental health
Mental health is such an important aspect of living with CF. Thankfully, I am someone who's been lucky enough to have positive mental health and coping skills through a lot of my experiences with CF. However, I have noticed as my CF has gotten worse and my physical health has declined, my thoughts and feelings have gotten more complex and heavier as I’ve had to process my own physical limitations, future, and mortality. Battling mental health has gotten harder as I have gotten sicker.
It’s made me realize how closely connected our physical health can be to our mental health and how we must take care of both. Dealing with mental health is difficult and it’s 100% ok to ask for help or support. Just as you would reach out to your CF clinic at the first signs of an exacerbation, the same goes for changing signs of mental health.
The change on the outside
Since adolescence, fatigue has been a constant in my life living with CF. What I wish I realized back then is how it would get worse as my CF progressed. I just don’t have the same energy reserves as I did with higher lung function years ago. As a result, I pick and choose which events I show up to, which chores are priority, which relationships need my attention most, etc.
I have realized on the outside I am a lot less available than I once was which can be hard to come to terms with. It's hard to realize my disease has changed bits and pieces of who I would be without CF.
Clues pointing to CF
Our family was swimming in a local pool recently when I noticed a group of strangers staring. In my bathing suit my port was obviously protruding from my chest and I think that caught their eye. Also, I had my Dexcom CGM attached to my arm, bruises from insulin injection all over my tummy, and I was coughing all while being pregnant. I am sure the on-lookers had a few questions about this sick pregnant girl.
When I was younger, CF was a completely invisible disease showing very few clues to its existence. However as my CF has gotten worse, more clues have made their home on the outside of my body such as scars, medical devices, and outside symptoms. I have learned to accept a difficult exchange happens--staying healthy means the physical appearance of my body may change over time.
That's why I say I don't entirely agree with the statement that "CF doesn't have me". Having CF is a continuous evolution from one state to another. While some metamorphosis are more welcome than others, they all serve a purpose in the end.
How has the progression of CF changed you on the inside and out? Let us know below!
Have you (or a loved one) been experiencing any negative side effects from Trikafta?