Voices from the UK's pulmonary hypertension community
Emma is 22 and lives in Northern Ireland. She was diagnosed with pulmonary hypertension at 16 and was studying for a degree in England when the pandemic began.
“If I had to sum up the last couple of years, I’d say they have been stressful and tricky to navigate.
I was in the latter part of my second year of university in March 2020 and I was in a tricky situation personally as I was quite sick at the time, after having a sinus infection for a couple of months.
My mum was monitoring the news very carefully and within two weeks of covid reaching the UK I left Leeds to move back home to Northern Ireland.
She demanded that I went home, and a week and a half after I left, the universities closed anyway.
I felt a bit safer at home as my family home is very rural whereas my flat in Leeds was a student hub. I had a garden, and there were no issues with coming into contact with anybody because our closest next-door neighbour is half a mile away.
I was able to continue my studies remotely, but I never really got used to studying on Zoom.
It was always something that I hated.
From the socialising perspective, it did become more isolating because I had gone from living in a flat with five other people to moving back home. I did have my 15-year-old brother there but although we have a good relationship, we didn’t have lots in common.
I was very frightened about covid. Although my PH was quite stable, I had been so ill with the sinus infection, and at the time we didn’t know why certain people were getting so affected by covid. Perfectly healthy people were dying.
I was also worried because I was in such a student ‘space’. I’d see people posting things on social media about having house parties during lockdown and it ramped up my distress to see people my age not caring about the impact they could have on everybody.
It felt like not following restrictions was the norm for a large proportion of the student community and I often felt particularly impacted by that, because it felt quite personal.
My entire third year of university was spent studying via Zoom and it was frustrating because we still paid the same amount of tuition fees for a significantly reduced course.
The pandemic meant there were fewer things to do, which gave me more time to focus on my dissertation because I had a tendency to sign up for too many things. But equally, it became monotonous. All the days blended into one.
When restrictions were eased, initially, I didn’t like the things they would choose to change, such as mask-wearing. It was scary to me, and it felt like the start of the pandemic again. But I’ve now had my vaccinations and I think a little bit of my fear has gone away.
I’m getting better with it now but there was certainly a point for me where I was really wary about people.
I’d read things online along the lines of, ‘the elderly and people with underlying health conditions don’t matter’ and I was very concerned about being around people who might think that – because I’m not obviously visibly disabled. I didn’t realise how callous people can be.
I’d see people writing things like ‘it doesn’t matter if people with underlying conditions die because at least we would achieve herd immunity’ and that had a big impact on me.
There were times when it made me feel really worthless and surplus to requirements. I felt really hopeless about myself.
I think everything also created greater anxiety about my PH. I’ve been told before that I can be quite an avoidant person when it comes to my health, and the pandemic meant I was confronted with a lot of stuff that I didn’t want to think about.”
~Emma told her story to the PHA UK in the summer of 2022~
Life is short, and that is exactly what the last couple of years have shown us
The lack of control is probably what I struggled with most
I wasn’t willing to go back to work and put her in danger
Every corner I turned during the pandemic was scary, but my specialist centre gave me hope