Recently, one Sin writer witnessed a student getting scolded for waiting to use the toilets catered for disabilities. Her reply was that she has a disability and it had nothing to do with them.
“Once people know you have a disability, they are really accommodating. Where a visible disability introduces itself, an invisible one takes up a huge amount of your social life in terms of trying to explain to people why you have to approach something a different way, or why you are trying to avoid something,” says Hugh*, an NUI Galway staff member.
So why do certain disabilities receive greater attention than others?
Invisible disabilities, or hidden disabilities, are defined as disabilities not immediately obvious to the naked eye. Those with visual, auditory, mental and physical illnesses can all fall under this definition.
On an academic level, NUI Galway and most universities nationwide have a range of services available for illnesses both obvious and hidden. Assistive technology is available for those with visual and auditory impediments, and learning support is given on a case by case basis.
NUI Galway’s Students’ Union also provides a pedestal on which awareness days and campaigns can be presented to students.
Nonetheless, there appears to be a level of frustration amongst many social spheres, both in and outside of university life, with regards to invisible conditions.
Here are just some of such illnesses, and the stories behind them.
Sin writer and student of the university Dean Buckley suffers from idiopathic hypersomnia. This means that he does not recharge from sleep the way others do.
“Most of my symptoms don’t present visibly, I don’t have any visible assistive technologies, and my main visible symptom is falling asleep during the day, which most people just interpret as a typical student staying up all hour,” he says.
Dean never gets identified as disabled, and repeatedly feels the need to explain his condition. His symptoms make university life very difficult to manage. He cannot wake up without assistance, and often sleeps late into the afternoon.
He suffers from “sleep inertia”, or sleep drunkenness an hour after waking up, after which he suffers from deficits of memory and concentration: “I’m very worried about how I’m going to function in the workplace after I graduate,” he says.
“There are pretty much no services that accommodate my disability, but it’s very rare, so I’m not surprised. A university that claims to believe it can discourage poor academic performance by hiking up repeat fees clearly has no intention of making it easier for students with attendance issues to access learning materials,” he adds.
He thinks that the university is quite content to just pretend students like him do not exist until such sufferers force the institution to recognise them.
Arnold chiari malformation (or “chiari”)
“Arnold chiari malformation. Never heard of it? Many doctors haven’t either. It’s an incurable lifelong debilitating illness where the cerebellum part of the brain descends into the spinal column, restricting the flow of the spinal fluid causing endless amounts of symptoms,” Holly Buckle explains. She suffers from the condition, which is simply called “chiari” for short.
“Often there are days I can’t see, my arms stop working and I drop or can’t grasp anything. Anyone with chiari can tell you how frustrating it is not to be listened to and literally left for your body to fade away bit by bit. Many people end up dying from this. I am of a low herniation with severe symptoms and currently I’m on the same medication for the last two years to no avail,” she adds.
Another girl, Denise* says her brother suffers from the condition but his illness appears invisible to most: “Ben* looks like there’s nothing wrong with him,” she says.
“But he has headaches almost every day, he’s very sensitive to light and sounds and certain smells, he can’t walk or stand for long periods of time and he’s not allowed to lift anything over 15 pounds. He’s the kind of person people ask for help lifting things and he feels guilty if he says he can’t help, but he genuinely can’t without risking seriously injuring himself,” she describes.
TV3 broadcaster and producer Andrea Hayes also suffers from the condition: “To discover it isn’t going – ever – is probably the hardest thing to deal with. We struggle with denial within ourselves, and along with this, we are often judged socially or within our own circle of friends or even with close family,” she details on her blog.
“A simple remark can strike right at your core.”
NUI Maynooth graduate, Sinead Nic Eoin, has had clinical depression intermittently since the age of 11: “With regards to college, it was definitely really hard with the stress of exams and academic work,” she explains.
“I went to the councillor in college every year I was there and the services they and the doctor on campus provided were unbelievably good. It was when college ended and I was out in the ‘real world’ that things took a turn for the worse.”
Sinead feels that the public prices of mental health services are a “disgrace”.
“You almost have to force the therapists and docs to believe that you are unwell,” she says. She adds that the workplace can be an “incredibly unsafe” place to be with such a condition.
On one occasion, she was out of work for a month with severe depression. She repeatedly stated that she had experienced a reoccurring chest infection, which led to a formal hearing.
When she finally explained that she was “overwhelmed”, she was handed a leaflet for VHI’s employee assistance program.
Idiopathic chronic pain
NUI Maynooth graduate Mary* suffers from idiopathic chronic pain, the term for pain that has no apparent underlying cause.
“I’m in pain every single day; sometimes it’s manageable and sometimes I can barely move out of the bed,” she says.
“It’s so disheartening to not know what is wrong and I spent a long time worrying about it but I’ve learned now that it wasn’t helping and was making me feel worse. I’ve seen so many different doctors and had countless tests, MRIs, CAT scans, X-rays, the lot.”
Mary has collapsed in public on so many occasions she has lost count, and is in constant pain daily. Something as insignificant as dancing can leave Mary in chronic pain for days afterwards. She explains that this makes the condition a social nightmare.
“People don’t understand why you have to leave their party; I often hear ‘but you don’t look sick?’” she says.
“I know it’s not their fault and I don’t blame anyone for being mad at me in those situations but it is so hard to explain ‘I know, but I am’.”
*some names have been changed to protect identity.
By Niamh Cullen