Voices from the UK's pulmonary hypertension community

I didn’t want my condition to define me as a person, but the pandemic has made that happen

Sonia*, 56, lives in Essex and was diagnosed with pulmonary arterial hypertension in 2012.

“I cope with my condition by not telling many people about it. I like to think of myself as a ‘normal’ person as much as I can, but when covid came along that became impossible. I was now ‘vulnerable’ and it turned my whole life upside down. 

When I was told I was in the clinically extremely vulnerable category and advised to shield, I said to my husband: ‘That’s not me. How can it be? I go to work, I’ve got a family, it’s not me’.

I didn’t want to be in that category, and I didn’t want to shield, but I felt I had no choice.

I worked on a make-up counter in a shop, and I loved being around people, but suddenly I couldn’t go to work.  I hated staying in and I felt like a prisoner in my own home.

I was like a screaming child trying to get out, but I knew I couldn’t for my own safety and my own health. Those first six months were absolutely awful. 

I had to tell people about my condition to protect myself, and now more people know about it than I would like. I think maybe covid has brought out a lot of ‘secrets’ about people’s health.

The pandemic has changed the way I feel about myself because I’ve now become an ‘ill person’.

I’m now someone who has a health condition, not somebody is normal.

I didn’t want my condition to define me as a person, but the pandemic has made that happen. It’s been a terrible journey and it’s changed my life.

I feel like I’ve lost two years of my life. I think shielding has aged me, as when you’re sitting down and not doing a lot for six months, your body sort of declines. 

I was gardening, and I felt that saved me, but I used to be on my feet all day in my job. 

I did do some simple exercising with a friend over Zoom, just once a week, but there were also days when I would just sit in bed. 

The pandemic caused me to become very anxious, and as well as being anxious, I also became very frightened. Even when we were allowed to go out for a walk, I became very frightened about passing people.

I had problems accessing the vaccine when it came out because my GP surgery didn’t recognise that I was still in the clinically extremely vulnerable category, so that added a lot of stress to everything.

It felt like a big fight to get it. 

Having the vaccines though has given me the confidence to get back out and about and I’m back at work.

If they hadn’t come along, I don’t know where we would be today.

I ended up getting covid at Christmas in 2021 and it just made me slightly more breathless and tired than usual. In a strange way I think contracting it helped me, because it reassured me that my body could cope with it. 

I am a lot more positive now and the anxiety is receding, although it is still there. 

My husband and children have been a great support network for me through all this and without them I wouldn’t be where I am now. Thank goodness for family and good friends.”

~Sonia told her story to the PHA UK in the summer of 2022~

*name has been changed on request 


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