People don’t understand invisible disability – and this has to change
Jordan Byrne looks perfectly healthy, but she is battling MS and society’s lack of awareness
ONE day in December 2014, Jordan Byrne knew something was gravely wrong. She was 20 years old, working in a coffee shop, when all of a sudden an intense wave of vertigo caused her to collapse.
‘I was brought to hospital where I collapsed again,’ Jordan, now 25, recalls. An MRI revealed nine lesions on her brain. On Christmas Eve she underwent a lumbar puncture, and on New Year’s Day she was sent home with steroids. Doctors couldn’t work out what was wrong with her.
By March 2015, Jordan was back in hospital, after becoming blind in one eye. While there, she lost her sight in the other eye and was sent for an MRI, which revealed 32 lesions on the brain and spine.
Then came the diagnosis. Multiple Sclerosis — which quite literally means ‘many scars’. It’s a disease which affects the motor, sensory and cognitive functioning of the body and is usually diagnosed between 20 and 40 years of age. Three times more women than men are diagnosed with MS, and there is currently no known cause or cure for the condition.
Jordan’s health was being ambushed in a terrifying and unpredictable way. But the news that would devastate most people didn’t come as a major shock to her.
‘I had a feeling throughout my life that my health wasn’t quite right,’ she reveals.
‘As a child I was very clumsy, and was constantly falling over. I was always sick with colds and flu. So when I was told about MS, I was almost prepared. I didn’t fall apart.’
Jordan’s fortitude is remarkable, when you consider the severity of her symptoms. During her time in hospital, her condition continued to worsen until her medication stabilised it. She lost her short-term memory. She lost all movement from the waist down. The steroid treatment she was put on made her balloon from size eight to size 16.
Like the thousands of others in Ireland with the condition, Jordan had to wait months for rehabilitation. She spent over four months in St Vincent’s Hospital, sharing a ward with dementia and Alzheimer’s patients, waiting for a bed in St Michael’s in Dun Laoghaire. Waiting to learn to walk again. To this day, there is no designated rehab centre for the 9,000 people living with MS in Ireland.
‘I was just lying there, waiting amongst elderly people. There was nowhere else I could go,’ Jordan says, admitting that she’s thankful there’s a lot she can’t remember about that time in her life.
But Jordan’s physical health wasn’t the only thing that suffered. Her long-term boyfriend of almost seven years abruptly ended their relationship.
It caused tensions between her and her twin sister, Charley, too, as all the attention shifted to her ill sibling. And to add to her heartbreak, Jordan’s friends also abandoned her at her time of need.
‘That was the most devastating thing,’ she admits. ‘I cried constantly about that.’ Her lifeline was a puppy she got at the time, Teddy, her loyal companion, who ‘knows’ when her symptoms are particularly troublesome.
‘He’ll lie on my legs if they are sore, or nudge me to bring him for a walk, when I’m feeling low and want to stay in bed,’ she smiles.
Today, things are better for Jordan. Thanks to her medication, her most dehabilitating symptoms have been kept at bay, although she stills suffers from numbness down one side, pain and extreme fatigue.
Finding employment that has more flexible working conditions when living with MS can be difficult, so Jordan feels lucky. She works parttime in an administration job for an employer whose son has cystic fibrosis, and, she says, ‘he is really understanding’.
She has a new, loving boyfriend, who is patient and caring, and wants to make her happy. He brought her to New York to compensate for some of the travel she lost out on because of her illness, and they have a new circle of friends together.
In fact, to look at her, young and pretty and walking unaided, you’d never think anything was wrong at all. And that, she says, is part of the problem.
One of the most unsettling issues Jordan has to face on a daily basis is intolerance and disbelief that somebody so young who looks so well is, in fact, living with a progressive degenerative disease.
‘There is a real lack of awareness and understanding in this country when it comes to how we define complex health needs,’ she says. ‘I’m not ashamed of having a condition like Multiple Sclerosis, and I’m very
‘help We need with tolerance and patience
open about it. But people don’t know how to react to a young person who is sick.
‘And I think the lack of education and awareness in this country when it comes to disability is something that needs to change.’
That lack of understanding takes many forms. Access to disabled toilets in one thing — ‘they are always locked’, and when Jordan has to skip the queue to get to a toilet, she is often accosted by others, angry at this apparently healthy young woman acting unfairly.
‘It’s so frustrating. When I need to go to the bathroom, I need to go straight away, and many times when I‘m out in a public place I have to ask for a key to unlock the door to use the facilities. Or worse, skip the queue in the ladies and have to explain why I have to push past everyone else.
‘We need help in this country with tolerance and patience — spreading that message that not all disabilities are visible. And something practical like the provision of a universal disabled toilet key for those who need it would be a good start.’
Driving is another source of drama for Jordan. She has a parking permit, but because she seems ablebodied, she is often subjected to abuse from onlookers who see her parking in a disabled spot.
‘I’ve been verbally attacked about three times in the last year for using those spaces,’ she says.
‘It always ends up with me having
to explain why I’m parking there – that I have MS and have no feeling down one side. It’s really upsetting.
‘We need new symbology to depict these designated spots, for example. Just because someone isn’t in a wheelchair doesn’t mean you don’t need special access.’
Jordan praised the initative of the MSUnderstood Café, a popup cafe that gave customers an impactful insight into the everyday challenges of MS.
The simulated environment involved replacing the menu boards, coffee mugs, floors and furniture with specially-created materials and followed customers as they tried to enjoy their coffee break.
‘That was brilliant — even my boyfriend couldn’t believe what I was trying to cope with on a daily basis. Something like this helps people to understand.’
Jordan is speaking up about her experience in light of recent findings in the MS Index which gave an in-depth analysis of the state of care for MS in 30 European healthcare systems.
Ireland performed very poorly overall, ranking 22nd out of the 30 countries, due in part to a severe lack of specialist healthcare services for people living with MS in Ireland. Ireland has just two neurologists for every 100,000 people, which — along with the UK — is the lowest seen across all 30 countries.
‘Apart from the amazing work of MS Ireland, there is little support or help. Everything is a battle, a wait,’ Jordan says. ‘Everything that helps me is funded by myself and my family — an accessible bathroom, automatic car, trips to thermal baths to ease pain, my gym membership.
‘I was supposed to be part of the new cannabis trial for pain relief but like everything else it’s been
I want to be an advocate fo r change
put on hold. We are always last in the queue when it comes to innovative treatments. We need more access to new treatments, and better MS management.
‘People say ‘I’m so sorry’ to me all the time. I’m like, what are they sorry for?’ Jordan says.
‘I’m sorry that something like this is not being normalised in society and young people like me who are dealing with these invisible illnesses are feeling lost and ‘not normal’.
Like any other 25-year old, Jordan has ambitions and hopes and dreams and she’s not going to let her condition dictate her future.
‘I want to get a house with my boyfriend, to have a family. I want my dream job of working in Dublin Zoo. And I really want to be the voice for young people who have maybe been diagnosed with a similar condition, and help raise awareness of how things could be made easier. I want to tell people going through this or something similar that they are not alone.’
And Jordan might even get to communicate her message to a wider audience. She has entered the Rose of Tralee competition, and she says she would love the opportunity to share her story with Dáithí O Shea — and the rest of the world.
‘I want to be an advocate for any young person who is struggling. I want to tell them you can have — and we deserve— a happy life.’
See ms-society.ie and patients deservebetter.ie for advice.