From The Guardian ‘Blogging students’, 29 December 2014
Living with ME is tough but you can succeed if you pace yourself carefully – and ask for the adjustments you need. Blog by RHIANNON STARR.
When I was 13, I sat in a meeting with the head of year at my school, who told me that I wouldn’t be taking any GCSE exams. The reason? I live with a neurological disease – myalgic encephalomyelitis (ME).
I didn’t take no for an answer, and I’m now at the University of Kent studying history and philosophy of art.
ME is much misunderstood, but it basically means that you’re always tired, no matter how much you sleep or rest. That’s because the body’s cells don’t produce energy to make biological processes happen at a normal rate, according to research.
This triggers a domino effect. When the energy supply to the heart is impaired, it struggles to pump blood to all the organs, and then these malfunction.
It takes a lot of self-discipline not to over-exert myself. Doing too much can trigger a collapse and take weeks or months to recuperate from.
This is tough at university, where there is so much on offer: societies and organisations, an endless stream of parties, pub nights and coffee dates, chances to travel abroad, and volunteering and internship opportunities.
Simply attending classes is a strain on my health. After each lecture I have to rest for hours, with heat packs to ease the muscular pain, until my body recovers.
I try to deflect questions about my periods of absence, or why I’m not going out that night. I feel ashamed that I can’t keep up with the pace of life that my friends enjoy.
I’m lucky, though. ME can be so severe that it prevents many young people attending school, let alone university. But for the 1 in 100 children thought to develop the disease, I believe it’s important not to take all those options away from them.
Sonya Chowdhury, CEO at Action for ME, says: “The Equality Act defines ME as a disability, which makes it unlawful to discriminate against students who have it. Reasonable adjustments should therefore be made to accommodate students with ME.”
But these aren’t going to be offered up on a silver platter. So if you are a prospective university student with ME, how do you survive?
I knew I’d need relatively quiet accommodation, because it’s so crucial that I get plenty of sleep. When I contacted the accommodation office, their first reaction was to laugh at such a daft request.
But I chose a room in a small block – fewer people meant fewer nocturnal fire alarms – and it worked. You need to identify what would help you, no matter how unorthodox, and explain it to whoever can help.
Emma Boba, who graduated with a physiotherapy degree from Sheffield Hallam University in 2013, says: “I was allowed to work shorter shifts during my placements, which made a big difference. My placements were also all in Sheffield – travelling uses lots of energy.
“Without those adjustments, there’s just no way I would have been able to complete all my placements within the time period.”
It’s not always easy to arrange, though. Emily, who graduated from Canterbury Christ Church University in 2013, says: “I realised I wouldn’t be able to write during my exams in third year, because my muscles were totally seized up and I was in excruciating pain.
“I did get permission to use a laptop, but not until 5pm the day before my first exam. I’d been stressed out for weeks, thinking I’d have to repeat the year.”
In my case, thankfully, the staff who know me are really supportive. They allow me to spread out my deadlines across the year and sometimes to choose which seminar groups I’m in. That gives me time to recuperate in between classes.
However, even with all the “reasonable adjustments” in the world, occasionally my ME can be so debilitating that I need periods of time off to recover.
Despite what anyone says, it’s possible to succeed at university when you have this disease. Emma and Emily both graduated with first-class honours, and I was delighted to receive an award for outstanding academic achievement on my course this year.
It’s difficult, and at times it can feel nearly impossible. But when the odds are stacked so high against you, beating them is something to be proud of.