Chronically Uncool – a Column by Ellie Bird

making time count, therapy

Ellie is a cat lover who lives and works in Cambridge, UK. She was diagnosed with pulmonary hypertension in 2017 at age 22, having just graduated university with an English literature degree. Now she works in higher education and dedicates her spare time to raising awareness about PH, reading books, singing and going for walks in the countryside (when not too breathless!). She also, in stereotypically English fashion, drinks a lot of tea — preferably with a slice of cake!

Navigating Summer Fun With a Chronic Illness

Summer is in full swing here in the U.K. Many are jetting off on holiday, and thousands flocked to the recent Glastonbury Festival. I’ve always loved summer, music festivals, heat, and travel. But now that I live with pulmonary hypertension (PH), I have to make certain adjustments.

Why I Value Emotionally Intelligent Doctors as a PH Patient

After four years of living with pulmonary hypertension (PH), I’ve learned that there are good doctors, bad doctors, and doctors who fall somewhere in between. I’m lucky to have had mostly positive experiences, but the reality is that doctors who specialize in treating physical illnesses may not always be…

The Challenge of Making Friends as an Adult With PH

Most people realize that living with a serious health condition can make it difficult to develop romantic relationships. The difficulty of forming new friendships doesn’t seem to be talked about as often. Making friends as an adult is hard enough without the added complication of a chronic illness…

New Year, Same Chronically Ill Me

Ever since I was diagnosed with pulmonary hypertension (PH) in 2017, I have hated this time of year. I refuse to make any resolutions, and I usually take some time away from social media to avoid looking at everyone else’s personal rebrandings. I’ve given…

How PH Changed My Relationship With My Body

Having a chronic illness can affect a person’s relationship with their body. It can feel like their body has let them down because it’s not working exactly how it should. Before I was diagnosed with pulmonary hypertension (PH), I used to love…


A Conversation With Rare Disease Advocates