Columns

This is what I need. I’m going to tell you instead of my doctors, because that’s the life of a chronic patient. Even though I will tell my team, and I adore them, their hands are tied, because I am not a whole person. Instead, I am chunks and pieces,…

March is a heavy month. Like clockwork, physical and emotional symptoms seem to erupt out of nowhere. Four years ago this month I almost died. On an unconscious level, our bodies remember the trauma we’ve endured. March 2017 was the most difficult month of my life. I’ve never fought…

It’s not my birthday or my lung transplant anniversary or anything. But today, I’m thinking about being old-ish. I’m thinking about how Mom realized my life expectancy in college biology, and how I realized it in middle school biology. I’m thinking about the times I drove myself nuts by…

“I am sick of being a woman,” I say far too often. “Especially a sick one.” Maybe you’ve read this before. I’ve probably written it. But it begs repeating. It’s hard seeking healthcare as a woman because our concerns are quick to be dismissed, our symptoms swept under the rug.

Chadwick Boseman is dead, and I’m going to write about it. He has been dead for seven months now, so this isn’t breaking news. Even so, I remember exactly when it happened. It was the same day my Aunt Joyce died, and I remember thinking how strange it…

“You have stage 3 kidney disease,” the doctor told me. I remember that first appointment with my nephrologist as a blur. Choking back tears, I took in the news with trepidation. I wasn’t prepared for this world of newly discovered health problems. Yet there I was, three weeks after my…

I am staring at a blank page trying to figure out what to write, and all I want to say is: “I’m so stressed.” I want to tell you about all the crazy pressures and stressors I’m under because it’s all I can think about. How can I write anything…

I used to dislike surveys, polls, and questionnaires. I understood why they existed — customer or patient feedback is important — but I never really saw anything change once I took a survey. I hadn’t considered that perhaps my feedback was unrealistic or didn’t represent the entire community. It wasn’t…

Because we just honored Rare Disease Day on Feb. 28, I’d like to share what it’s like living with one. Having a rare disease means strangers telling you what your rare disease means, even though they’ve never lived or worked with it themselves. It means existing with stereotypes…

Social media is a strange and fickle web of predetermined, or accidental, personas. I used to be very active on social media, with the intent of spreading awareness of cystic fibrosis. It was easy to do because it was taking over my life. There was never a shortage of doctors’…