An Aberdeenshire mum with a hidden disability says she gets “queer looks” for using her blue disabled badge when parking.
Nicki Ross from Tarves has pulmonary hypertension (PH), a life-limiting condition that causes high pressure in the blood vessels connecting the heart and lungs.
The 51-year-old struggles to breathe, cannot walk more than a few metres unaided and is constantly exhausted.
Diagnosed with PH in October 2022, she also lives with fibromyalgia, a long-term condition that causes pain all over the body.
The mum-of-one uses a mobility scooter or wheelchair when she is outside of the house, but says she still encounters judgement for not “looking ill”.
She is calling for people to be more understanding of hidden disabilities, and is backing a campaign to encourage better understanding of PH.
‘Because I look OK, it’s hard for others to understand’
Nicki said: “I park in disabled bays as I have a blue badge and when I walk out of the car unaided I get queer looks from people. Then when I’m in my wheelchair, it’s like I’m invisible. People often go through doors ahead and let them close on me.
“Because I look healthy, a lot of people don’t seem to understand that even the slightest exertion can wipe me out. If I walk the length of my street, I have to go to sleep for two hours to recover. Because I look OK, it’s hard for others to understand that there is something severe going on in my body.”
Investigations have shown that Nicki’s PH was caused by a faulty gene, with her 20-year-old daughter Olly now being screened for the same mutation, although it can appear “out of nowhere”.
Despite being based in Aberdeenshire, she receives treatment for her PH 177 miles away at the Golden Jubilee National Hospital in Clydebank, the only hospital in Scotland that provides specialist care for the condition.
As well as this, she takes three different types of medication which helps to control her symptoms, but there is no cure.
‘I know that I will deteriorate in the future’
She said: “I’m stable at the moment, but I know that I will deteriorate in the future. Despite everything though, I do feel lucky. I’ve responded well to the medication and although I’m not able to work, we can still go on holiday. We went to Disneyworld recently and I wore a badge which said, ‘I’m celebrating my life’.
“When I was diagnosed, we didn’t even know if I’d survive, so now it’s about making as many memories as possible.”
Chairman of charity PHA UK, Dr Iain Armstrong added: “Very few people have heard of PH 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 Nicki for sharing her story to raise vital awareness of PH.”
Conversation