It has been close to 5 years since I woke up in the morning without wincing in pain, but whether I like it or not, my chronic pain shapes my life and who I am. I suffer from endometriosis and polycystic ovarian syndrome (PCOS), which basically means I suffer from intense abdominal pain almost everyday. And if its that time of the month… well let’s just say agony is not even the word; more often than not I’d end up in A&E. To top that off, this year I have been diagnosed with an autoimmune disorder with a full diagnosis pending, but it has slowly affected my mobility and leaves me in quite a bit of pain as well. Hence, the past 2 years, have been a journey of acceptance and discovery, and learning to be comfortable with the word ‘disabled’.
I am an international student. This means I grew up in a very different culture with very different stigmas. To this day, I am unable to be completely open about my disabilities, even with my family members, due to the stigma surrounding invisible illnesses. Living in Belfast, far away from home, with this fear of telling someone I was in pain made me finally open up to the fact it was indeed a chronic illness and realise that it was ok to stop and take a back seat to listen to my body and its needs. You see, I was raised in a culture of ‘no excuses’; this meant I found it hard to ask for help when I needed it, but also meant that being in excruciating pain seemed like an ‘excuse’ to me. And so I would ignore my pain and press on, hurting myself more, both physically and mentally. It meant that in my head, I had no room to “label” myself ‘disabled’, because I could not accept that I was indeed disabled with an invisible illness. This cognitive dissonance of course did not help my already fragile mental health.
At this point I think it would be important for me to explain that along with my own internal struggle with accepting my chronic illness, and accepting that it was a disability, I had to fight for my illness to even be acknowledged by my doctors. The number of times I had been to my GP begging for pain relief to be told ‘it’s just period cramps’ – even when I was not even on my period. My GP refused to believe my condition, even though I had a diagnosis from my doctors at home. They told me it was because of my weight and that the simple solution was to lose weight or go on birth control. Which by the way, trust me, I tried! I went on birth control and it only worsened the symptoms I experienced. I begged my GP for a referral, or even a scan, anything that would put me one step closer to receiving care for my condition. But I was consistently refused and eventually, I gave up. I relied on appointments with my doctors back at home over the summer and carried back medication to last the 10 months I’d be here in Belfast. However that would and could never work. With a chronic illness I need monitoring of my condition to see what worked and what didn’t, and without consistent follow-up, none of my medications would ever prove to be useful.
It took me 3 years of constant pain and struggling in university before I finally fought my battles with my GP and got a letter. I finally was able to ask for help. I was struggling with my degree and had reached a point I was completely unable to handle the stress, which then worsened my pain and severely limited my mobility.
It was only then that I learnt of the limitations that I faced as an international student, in applying for the help I needed as a disabled student. I hold a Tier 4-Student Visa, which denies me access to public funds. Hence I was not eligible to apply for either a Disability Living Allowance (now known as PIP) or a Disabled Students Allowance. A non Tier 4 international student, also can’t apply for the DLA/PIP/DSA as they are required to have a minimum of 3 years of residency in the UK.
I was also told that the University has discretion to only make the bare minimum “reasonable adjustments” (such as access to a green room venue for my exams, extra time for assignments, etc.), and unless I was able to fund the other support services I needed, such as having a note-taker for example, I would not be able to receive that support. I also learnt later that, the University often turns down support requests from international students, citing them as “not financially viable” or refers them to the Hardship Fund. The Hardship Fund is a very small pot of money in itself; any applications, if approved, usually amount to small hand-outs of around £200 – not at all a feasible source of payment for support services/equipment!
The very same International students who pay exorbitant sums of money ranging from £15,100- £35,900 (UG Fee rates for enrolment in the current academic year of 2017-18), being treated like cash cows by a university that denies them any access to support services, as they are “not financially viable” and gets away by providing the bare minimum “reasonable adjustments”. As an international student, I do not just feel angry and discriminated against, but appalled that a group of students can be side-lined in this way and that it can be completely ignored and structures accepted the way they stand.
The University, currently, and very recently, has created a support fund specifically for international students. This came about after much pushing for such a pot of money to be put in place for supporting the needs of a growing population of international students as QUB continues to expand and globalise. However, this has not been widely publicised to the international student community and so not many students are even aware that they may now be able to receive this fund. Yes, I said, may… it’s not very clear how big or small this pot of money is, if it is going to be sustained or if it is a one-off thing that will end when the money put aside runs out. In fact, I only learnt about this when I was asking Disability Services about the referral process for an international student, to fact-check what I was writing, to ensure it was not a gross misrepresentation, and not just a one-off experience.
So, as far as I am concerned – international students still have plenty of uncertainties about being disabled students in QUB. We come from various cultures and have so many different views on disability and being disabled. Many of us struggle with asking for help, even when we know it’s there, let alone asking for help that is not available or when we have no idea IF it even is available.
I love this university and I have had so many priceless experiences because I have come here to pursue my education, but it has been a hellish experience knowing an institution I pay so much to, and am so proud to be a part of, has essentially turned its back on me at a time I needed it the most, through its structures and lacking support services, engagement and communication.