Will the next Welfare Officer consider campaigning for those with invisible disabilities?
Only when I sat down to write this article did I realise it’s been just over a year since I was diagnosed, which I suppose makes it seven or so years since I first went to the doctor because I was tired all the time and didn’t know why.
Seven years of waking up exhausted, no matter how early or late I went to bed or woke up.
Seven years of falling asleep in classes and lectures, as I tried to muddle through my reading, or just sitting on the couch, trying to do nothing so I could conserve my energy for the next chore, the next assignment, or, most gruelling of all, the next social occasion.
Seven years of grades that made me ashamed because I knew I could do better, if only I had whatever was missing inside me, whatever was broken fixed.
My condition is called idiopathic hypersomnia and I can give no more succinct a summary than this: I don’t recharge from sleep.
No one knows why, so no one knows how to treat it. But worse than that, no one cares to know how to treat it, because it’s a rare disease, so rare that we don’t even have accurate stats on its rarity, but certainly too rare to be worth anyone’s research money.
As well as exhaustion and falling asleep during the day, my symptoms include sleep inertia and paralysis, nightmares and hallucinations, deficits in memory, attention and concentration, and, most debilitating of all, I often just can’t wake up, even if someone physically shakes me. Like most chronic illnesses, it both causes and aggravates anxiety and depression.
Finally, though we lack hard data due to its rarity, people with idiopathic hypersomnia can expect an unemployment rate at least as severe as narcolepsy with cataplexy (30 to 59 percent), and likely higher, given idiopathic hypersomnia is generally considered more debilitating.
I’m in the final semester of the final year of a four-year degree, and those are the numbers that scared me into writing this article.
Only in the first week of February was I able to get a letter from my consultant, whom I hadn’t seen once in the year since my diagnosis, and hand it into the Disability Support Service as proof that I needed and deserved help.
Many of my lecturers were as compassionate and helpful as they could be over the years, but until I had that piece of paper, as far as the university was concerned, I wasn’t disabled, and had no right to access the supports and services I needed.
There’s no doubt in my mind that lack of access has negatively impacted my grades, and one reason I’m struggling to keep the dream of a 1:1 alive, when an exceptional final grade is the only thing I hope will convince anyone that it’s worth their while to hire a headache like me when they could hire someone who’ll never be late, behind on work, or fall asleep on their desk at noon.
Now, it may well be that DSS’s current strict criteria are the only criteria that can allow DSS to deliver effective services to students with disability, without abuse by non-disabled students looking to scam their way to free print credit or exam compensation.
Students with invisible disabilities, chronic illnesses and rare diseases, misunderstood conditions that are difficult to diagnose, who spend years bouncing from consultant to consultant before we can finally put a name to our suffering, disbelieved and unacknowledged, we may well be the necessary casualties of protecting this funding.
But if we are, if this really is just the way things have to be, if there’s truly no better way to ensure the integrity of these services, if the university is already doing everything it can to make sure as many students with disability as possible are getting the services they need, I want the university to prove that to me, like I had to prove myself to them.
I want them to explain why every alternative system would reduce the quality of service so severely that it justifies locking out hundreds of students from access to everything they need to succeed in college.
If they can’t, I want students with invisible disabilities to be able to stand together and demand everything we need and deserve to succeed.
Last year, I gave my first preference in the election of Vice President for Welfare to my friend Megan Reilly because her platform included a forum for students with chronic illnesses and invisible disabilities to talk about our experiences, explain the challenges we face and maybe even find some solutions.
This year, I’m asking every candidate for Vice President for Welfare to make a similar pledge, to promise, if nothing else, a chance for students like me to have our voices heard, our struggles understood, and our needs put on the agenda.
Seven years later, it’s too late to undo all the damage done to my future by my disability and all the support I never received.
If you really care about the welfare of this university’s students, prove it by putting some of its most disadvantaged, vulnerable and invisible students at the heart of your campaigns.
Let this year be the last year that a student with invisible disability felt they had nowhere to go when they realised their future was falling apart.
By Dean Buckley