Jasmine Lowdon has even been asked intrusive questions about her sex life with childhood sweetheart Alex Hay.
A disabled woman has slammed “ignorant” strangers who mistake her able-bodied boyfriend for her carer – and even ask invasive questions about her sex life.
Jasmine Lowdon, 25, has been with her partner Alex Hay, 24, for a decade after the pair met at school.
In that time, they have weathered her being diagnosed with a string of illnesses that now see her mostly reliant on a wheelchair – namely epilepsy, ME which is a neurological condition affecting the nervous and immune systems, and postural tachycardia syndrome (PoTS) where simply standing up can cause an abnormal increase in heart rate.
But, though the couple, of Gateshead, Tyne and Wear, are stronger than ever, Jasmine continues to feel frustrated at the reactions of strangers.
She explained: “We constantly get people thinking Alex is my carer. Once, when we were out on a date together, a lady even asked what time he finished work.
“People will also speak over my head, directly to him, or even see the chair as an open invitation to ask questions.”
She continued: “It’s fine if it’s children, as they are still learning, but adults can be very rude. We’ve literally been asked about our sex life on the bus before.
“I wish people would stop making assumptions and see us for what we are – a young couple, in love, just like anybody else.”
Jasmine, whose health means she is unable to work, first met retail worker Alex when they were just 12 years old.
Immediately drawn to one another, they enjoyed a sweet puppy love-style romance, holding hands in the playground.
But, before long, Jasmine’s health rapidly declined as she began to suffer mysterious seizures.
She recalled: “I would lose consciousness, and my head would jerk around.”
Eventually, aged 14, she was diagnosed with epilepsy, which affects the brain and causes bursts of electrical activity known as seizures.
Though initially relieved to have an answer for what was causing her symptoms, things soon went from bad to worse.
“Shortly after my diagnosis, I began feeling incredibly tired, to the point where I’d struggle to get out of bed,” she explained. “At first, I thought it was just my body reacting to the epilepsy, but eventually I realised it wasn’t right.”
“He’s doing such a good job going out with a girl in a wheelchair”. @EmilyRYates on relationships #EndTheAwkward https://t.co/8Ezz7IzgBU pic.twitter.com/TFLtFrAc7K
— Scope (@scope) October 5, 2016
Consulting the doctor, Jasmine was referred for a string of tests and, aged 17, was diagnosed with ME too.
A chronic condition, common symptoms include debilitating pain, fatigue, sleep and memory issues and migraines.
“It can be very difficult to get an ME diagnosis, as there is no set test for it,” said Jasmine. “So, in a way, I was lucky it was diagnosed. But my health was still deteriorating. Not only was I having seizures related to the epilepsy, but I also began fainting too.”
She continued: “Doctors were struggling to tell the difference, as they look outwardly similar, but I could tell them apart.
“With fainting, I would get really hot and feel sick, whereas with a seizure, it was like a swarm of bees were in my head, and I’d completely pass out.”
After yet more tests, aged 19, Jasmine attended Newcastle’s CRESTA Clinic for a tilt table test to determine the cause of her fainting.
During the procedure, she was strapped to a motorised table before being tilted at different angles while her body’s reactions – including her heart rate, blood pressure and any light-headedness – were monitored.
The results showed that, in addition to her other conditions, she also had PoTS.
“It’s an abnormal increase in the heart rate that occurs after sitting up or standing,” she explained. “Where someone else’s blood would be able to pump round their body, mine pools in my legs, which can leave me light-headed and cause me to faint.”
She added: “I can’t stand for more than a couple of minutes, which is where the wheelchair comes in. Anything that raises the heart rate can be a trigger, so heat is also a problem.
“The summer heatwave last year was a nightmare, and I can’t even shower or bathe in hot water without Alex there to help me.
“We learnt the hard way that shock is a trigger too, after a friend jumped out on me as a joke and I fainted. He felt awful, but knows not to do it now.”
Though Jasmine was relatively well at first after her diagnoses, in January 2015 things came to a head and she “completely crashed” – ending up bedbound for a month.
She continued: “The PoTs in particular was very bad. I couldn’t even sit up in bed without fainting.”
But, having become her official boyfriend when they were 15, Alex was by Jasmine’s side throughout.
She added: “When I was younger, I’d really worry that he’d have enough of looking after me, or get sick of the fact I couldn’t always keep up with our friends, and leave me.
“But he’s been there throughout, and got me through some truly awful times.”
Whilst the young couple are stronger than ever, Jasmine does still find herself the target of hurtful comments or assumptions, and hopes that, by speaking out, she will help normalise disabled and able-bodied people being in relationships.
She explained: “People are constantly calling Alex a hero, or telling him it’s great he can ‘see past’ my wheelchair.
“I know they mean well, but I find it patronising, and it erases my experiences. We both know I’m disabled – we can’t pretend otherwise – but I’m still me.
“Once, we even had someone offer to take him for a drink ‘to give him a break’ which I was really taken aback by. He is great at remaining calm, though. We always just talk about it afterwards and make sure each other are okay, as we don’t want to react at the time and cause a scene.”
Another frustration Jasmine endures is people talking about her as if she isn’t there, directing questions or comments to Alex instead.
She continued: “That often falls in with the assumption that he is my carer. I think it all stems from society struggling to normalise relationships between able-bodied and disabled people. People will see Alex and think, ‘What’s a young lad like that doing with her?’
“When we are out on dates, though, he will purposefully squeeze my hand or do something like that, to make it clear we are a couple.”
She added: “Although he does help me a lot with my health issues, he is, first and foremost, my boyfriend. We’re no different to any other couple, and can still do all the same things – it’s just that we may have to adapt slightly.”
Now, though there is no set treatment for her conditions, Jasmine, who has regular physiotherapy appointments to help build up her strength, is feeling hopeful.
Currently, she mainly uses a wheelchair for distances longer than a couple of metres, but is working hard to maintain a balance between “over and underdoing it” to keep herself as well as possible.
And, whatever the future holds, she knows Alex will be by her side.
“We live together now, and are on the same page with marriage and all of that in the future,” she said. “I can’t imagine life without him. We’re a real unit and have learned to laugh during tough times.
“Going through so much together has also taught us not to worry about petty problems.”
