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I compare myself to other people. I shouldn’t, but I do. Sometimes, other people seem nervous to compare themselves to me. “I don’t want to sound like I’m complaining about my health to you” is a regularity, and I never stop appreciating that sensitivity. We have all known that person…

I haven’t tasted much energy over the past month. Thanks to steroid withdrawal, I spend most of my time near home. It’s not all that bad, honestly, to sit around and do nothing. “Doing nothing” can be productive. I didn’t always feel that. Back in my pre-transplant days, I…

All interpersonal relationships are a power struggle. With our friends, family, caretakers, providers, co-workers, and everyone else, we are pushing and pulling, and giving and receiving power in one way or another. That’s not to say that everything in life is transactional; you don’t hold the door for someone and…

“You don’t look Deaf.” This is something I’ve been told while my best friend — who is hearing — was told she does. I’ve had a sign language interpreter turn to leave my hospital room because I spoke to them when they entered. I’ve been on the flip side of…

Fatigue is a challenging condition to describe. It entails being tired, but it’s so much more than that. Fatigue is the side effect of chronic illness that haunts me the most. It can hit at any time like a ton of bricks. The worst…

We need to come to grips with a problem deeply affecting the cystic fibrosis community. It’s an issue that we don’t talk about much: chronic pain and its relationship to depression and anxiety. It’s a multifaceted subject: Not only are rates of depression and anxiety higher in people with cystic…

I don’t have anything to write. I don’t have anything to write because I don’t have anything left inside of me. I just got out of a stint in the hospital for a sinus-related exacerbation (among other things), and am currently on week two of home IV antibiotics. I’m tangoing…

Humans are creatures of habit. We become accustomed to our circumstances. Most of us complain about our boring routines, but when they are disrupted, we can feel almost separated from our reality. Routines are a form of comfort, a gauge of where we’re at in our lives, professionally, physically, and…

A cliché exists in the world of reality TV: the contestant who says they’re not there to make friends. I never meant to be that person, but I’m afraid that’s whom I’ve become.  When you have a rare disease like cystic fibrosis, which affects more…

I often hear, “CF does not define me.” However, while cystic fibrosis (CF) does not define me, it is a part of me. It has helped shape who I am as a person. So, it does define me. It defines me in the same way that being a…