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Disclosure. What a heavy word. While most people have some aspect of their lives hidden from view — or perhaps kept secret — for someone with cystic fibrosis (CF), disclosure can be a particularly anxiety-inducing word. I believe that CF should never…

I was fully deaf, too weak to walk across my living room (I couldn’t reach my upstairs bedroom anymore), constantly coughing and vomiting, soaked in sweat and wheezing, too anxious to face friends, under my parents’ 24/7 supervision, without a job other than occasional editing for a local magazine,…

My depression and anxiety went undiagnosed and untreated for years. I knew something wasn’t right, but I didn’t think it was “bad enough” for me to be officially diagnosed with depression or anxiety. My life wasn’t “bad” — my health was fine, and I was a good student…

Worrying is one of my most exceptional talents, as illustrated last week when preparing to travel to New York City. I strongly connect with the phrase “dress rehearsing tragedy.” If life starts to stabilize, I worry about the other shoe readying to drop.

I’ve been invited by Dr. Susan Madge to speak at the Cystic Fibrosis Trust and CF Europe Community Afternoon in June. Dr. Madge, director of the Adult Cystic Fibrosis Centre at the Royal Brompton Hospital in London, will be chairing a conversation on…

I’m restless. My eyes are red-rimmed from late-night Google searches. I can’t sleep, in part thanks to CF symptoms, in part because of a mind that’s running too hot, too fast. In daylight, too, I’m preoccupied. Each time I sit down…

Three years ago, I was hardly involved in the broad cystic fibrosis (CF) community. My only involvement with CF – aside from the fact that my sister and I have it – was some undergraduate research in a CF lab and taking part in Great Strides walks over the…

Today I couldn’t make an appointment with my primary care physician. Although I still feel new to the area where we live and am not exceptionally close with my primary care office, yet my primary care physician is essential. As someone with a…

The month of May rolls around and I find myself trying to take the perfect selfie. I want to capture not only my face, but also my percussive Vest device and my nebulizer. But getting it all into one shot is tricky; at some…

In my journey to make sense of the world of work while having a life-limiting illness, I have often wondered, “What does it look like to be a leader with CF?” To help answer that question, I spoke to Rob Bates, a creative director from London.