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!Lots of people count their steps using a Fitbit device or their phone, but for me it has been a total lifeline. Being less active during lockdown made me worry that my fitness had declined and that I had generally deconditioned. Putting on a bit of…
The world is re-opening. People are returning to bars, restaurants, and shops. They’re reuniting with loved ones and friends. I’m terrified. I’ve been locked down for over three months, but the last couple of weeks have been the most challenging. The pandemic has been…
One of the hardest parts of having chronic health problems is the guilt. Many people struggling with complex conditions are branded “lazy.” And sometimes we even brand ourselves. Before I was diagnosed I was always exhausted, had very little energy, and would often take naps in…
Before I got sick I thought doctors knew everything. I thought doctors would know exactly what to do if I was ever unwell, and that I could just mindlessly follow their advice. My experience with chronic illness couldn’t be more different. I remember the first time…
Society doesn’t make it easy for people with disabilities and health conditions, including in the workplace. Historically, people with disabilities have struggled to hold down jobs. People with pulmonary hypertension (PH) rarely work full time, as it can be physically…
Sometimes I feel like having a health condition is a full-time job. I also have a “real” full-time job. Before I was diagnosed with pulmonary hypertension (PH), I never considered how much admin would be involved in having a serious health…
Since I was diagnosed with pulmonary hypertension (PH) in 2017, I have struggled with people in my life who don’t understand what my illness is or how it affects me. PH is a rare disease that…
I’ve written in previous columns about the difficulties I’ve experienced while navigating romantic relationships with a chronic illness. This week, I wanted to write positively about finding love with pulmonary hypertension (PH), and some of the little things…
One thing we hear a lot about while living with a serious chronic illness is the importance of staying positive. But what does that mean? The “importance of positivity” is a common trope both inside and outside the chronic illness community. While a lot can be…
One of the hardest things about the diagnosis of a progressive illness is grappling with how your disease will affect your future independence. It can be scary and painful to think about how, as your disease progresses, you will become more and more reliant on other…
The COVID-19 pandemic is a stressful time for everyone, but it can be particularly stressful for those trying to manage long-term medical conditions. Many people with serious health problems are seeing their doctors’ appointments canceled, postponed, or changed to telephone or teleconferencing appointments. Since my…
When living with significant health problems, one must balance not only personal worries, but also those of family members and friends. This can be a lot to handle. One of the things that upset me most after my pulmonary hypertension diagnosis…
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