Compartmentalization carried me in life with CF, but also boxed me in
Therapy helps me sort through those boxes instead of keeping them closed
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At 55, and six years past a double-lung transplant, I sometimes catch myself marveling at how I’ve gotten this far with cystic fibrosis (CF). When I was a kid, nobody handed my family a map that stretched this far. Yet here I am, still learning how to live beyond my diagnosis.
One quiet skill that helped me get here is one I rarely talk about: compartmentalization.
Living with CF means running two lives at once. There is the patient, who does airway clearance, tracks medications, sits through clinic visits, and negotiates with insurance.
And then there is everyone else I need to be. As a student, I learned to walk into a classroom and leave the hospital at the door. A paper was due no matter how I felt. In my career, I became skilled at doing my job while my body staged its own argument, keeping my face steady and my focus on the work. I could allow myself to feel horrible when I fell into bed later. As a parent, I faced the highest stakes. My child needed a present, engaged mother. She did not need a frightened one who counted her lung function numbers at the dinner table. So I built the walls a little higher and a little thicker.
This was the art of it, everything in a box on the shelf: patient in one box, student, professional, and parent in others, with each given its own space so that none could swallow the rest.
A matter of survival
For those of us with CF, this isn’t a clever life hack. It is survival. If I let every worry about my disease follow me into every room, I would never get out of bed. But walls built for protection can become habits, and habits don’t always know when to stop.
The same mental muscle that let me focus on a final exam during a rough exacerbation also taught me to set aside fear, grief, and anger and deal with them later. The trouble is that later has a way of never arriving on its own. With CF, the next issue may arrive before we can open and deal with the first.
Over the years, I’ve learned that compartmentalization can bleed into places it doesn’t belong. It can make it harder to be vulnerable with the people who love me most. It turns me into the one who always says, “I’m fine.” It’s such a common theme in CF. It can leave feelings stacked in the closet until the door won’t close anymore.
And there is so much to stack with CF. The hospitalizations. The close calls. The friends we’ve lost along the way. The transplant evaluation. The waiting. The call. And the recovery.
Our families lived all of it right alongside us, in waiting rooms and at bedsides. They carry their own fear and trauma, often unspoken because we were all busy being strong.
A balancing act
It is a lot to balance. Honestly, it is too much to balance alone.
This is the part I wish I had understood sooner: Compartmentalization is a tool, not a treatment. It can get you through the moment, but it can’t help you process what you’ve been through.
Working with a mental health professional, especially one who understands chronic illness and transplant, has helped me sort through what’s in those boxes instead of simply keeping them closed.
In my experience, a good therapist doesn’t force you to tear down the walls. Mine has helped me decide which ones are worth keeping and open the ones that have been shut too long.
Many CF and transplant centers have social workers on the team for exactly this reason. Families and caregivers deserve that support, too, because they’ve been carrying their own share of the weight.
Asking for help isn’t a sign that the strategy failed. It’s what allows the strategy to keep working without costing us our connection to ourselves and to each other.
Six years after transplant, I am still learning how to live in the extra time I’ve been given. Part of that means honoring the skills that carried me here, including my talent for setting things aside. The rest is learning when to open those boxes and look at them in the light with people who can help me carry them.
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, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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