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!

Please Don’t Make Me Explain My Illness Again

Not too long ago, I met someone and opened up to them about my pulmonary hypertension diagnosis. They listened and thanked me for sharing my experience. Later that week, they sent me a message saying they had researched my condition and wondered if I…

How I’m Making Time Count During the Pandemic

One difficult aspect of the pandemic and all of the necessary restrictions that have been put in place is the feeling that our time is being wasted. Young people, and likely the elderly, too, especially worry about this. Some might say, “I don’t want to waste my 20s…

Practicing Self-care While Working From Home

A few years ago, if someone asked me to describe what self-care meant, images of long baths and DIY face masks would have sprung to mind. But since my diagnosis of pulmonary hypertension (PH), my understanding of self-care has changed dramatically. For those with chronic illnesses,…

PH Often Prevents Me From Getting Quality Sleep

Everyone feels the effects of a bad night’s sleep. But for those with chronic illness, sleepless nights can be debilitating. Since being diagnosed with pulmonary hypertension (PH), I have found that if I sleep poorly, I struggle to function, which can make surviving a day at…

Living Alone With a Chronic Illness

Three years ago when I was diagnosed with pulmonary hypertension at age 22, I never would have predicted I’d one day want to live alone. At the time, I was terrified and became reliant on my family for support and comfort.  A lot has changed since…


A Conversation With Rare Disease Advocates