North Tyneside nurse with hidden disability says people assume weight causes her symptoms
A Tyneside nurse who lives with a progressive rare disease is calling for more understanding of hidden disabilities.
North Tyneside-based Cherise, 28, has chronic thromboembolic pulmonary hypertension (CTEPH), a life-limiting condition that causes high pressure in the blood vessels connecting the heart and lungs.
She struggles to breathe, can’t walk very far and is constantly exhausted – but people wrongly attribute her symptoms to her weight.
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Cherise, who works as a mental health nurse, is backing an awareness day to encourage understanding of CTEPH and highlight the difficulties of living with invisible illnesses.
Pulmonary Hypertension Day UK takes place on Friday November 1 and is organised by the Pulmonary Hypertension Association (PHA UK), a national charity that supports people affected by the condition.
Cherise was diagnosed with CTEPH, a type of pulmonary hypertension caused by clots in the arteries of the lungs, in October 2023 – just a month after qualifying as a nurse.
She said: “Having such a serious health condition as a young person sometimes feels devaluating. A lot of people assume my breathlessness is down to my weight and they don’t understand what’s really going on when I’m huffing and puffing. They assume that because I’m young and overweight, I’ve done it to myself – but I’m just trying to get by doing the one thing that most people find very easy to do, and that’s breathe.”
Having the illness affects every area of Cherise’s life, and at her worst, she struggled even to bathe or dress herself. She is self-conscious of her symptoms and wants to raise awareness of the challenges of living with an invisible disability.
“I’m constantly worrying that I’m breathing too loud or walking too slowly. I like to just try and crack on and say that I’m OK, but behind closed doors, some days I’m really hurting.
“I want the public to understand that PH is invisible and it’s not easy to live with. Have some compassion, and don’t be so quick to judge, as you really don’t know what other people are going through.”
Cherise receives treatment at the Freeman Hospital in Newcastle, one of only eight specialist treatment centres in the UK. She takes medication to help control her symptoms and has been told that pioneering surgery to remove the clots is an option if she loses weight.
She has already shed seven stone and is working hard to lose more to enable her to have the pulmonary endarterectomy, a major operation which involves draining the body of all its blood to clear the clots.
Pulmonary hypertension (PH) affects just 8,000 adults and children in the UK, and around a quarter of those live with CTEPH, the only type of PH that may be cured.
Dr Iain Armstrong, chair of the charity PHA UK, said: “Very few people have heard of pulmonary hypertension and those with the condition often appear well from the outside. It’s important for the general public to understand the challenges of living with a hidden illness, and to consider that not all disabilities are visible. We are grateful to Cherise for sharing her story to raise vital awareness of PH.”
You can hear more from Cherise in this video.
To find out more about pulmonary hypertension, visit www.phauk.org