I loved my first year at the Australian National University. I had landed a scholarship and found myself at college. I felt an overwhelming sense of relief – I’d managed to escape the poverty of country New South Wales and establish a safe haven for myself.

It was like walking in two worlds. I would talk to my parents on the phone every night, as they tried to make ends meet on the disability support and carers’ pensions, but, when I hung up on those phone calls, I could go about my new university life.

Although alienated among the more privileged people at college, I still made important friendships and received opportunities that would set me up for life. I was enjoying my classes, a new city and my newfound freedom. Everything was good.

Until it wasn’t. My mum got very sick in October of my first year and I had to return home. She spent weeks comatose and months transferred between different intensive care units, battling Guillain-Barré syndrome (GBS). I spent more time in hospitals than out, and had to defer, then drop most of my subjects. My dad wasn’t capable of looking after himself without my mum as his carer, and suddenly I was tasked with caring for both my parents and keeping our family together.

I dealt with changing my mum’s carer pension to the disability support pension and rang Centrelink crying when they put her on Newstart instead, and again when that was cut when she couldn’t make job provider appointments – still attached to a ventilator. I spent hours going through National Disability Insurance Scheme documents and applications, trying to get my head around disability support for mum’s GBS-acquired quadriplegia, and desperately needed support for my carer-less dad.

I had to find both my parents supported accommodation, pack up and sell their house, and move them out of regional Australia so they might have a chance at accessing the services they needed. My world was turned upside down, our home was ripped from us and I was tying up all the loose ends like they had both died.

During all these crises, I stayed enrolled at university. Uni was the one stable thing in my life, my sociology classes helping make sense of my place in the world. But being a student and a carer isn’t easy.

Like other student carers – who care for people with disabilities, mental illness, addictions or are frail and ageing – I find myself deeply disadvantaged compared with my peers, my caring responsibilities and the toll they take invisible to everyone around me. Every aspect of my wellbeing is mediated by my caring role, contingent on whatever emergency is about to unfold.

My world was turned upside down, our home was ripped from us and I was tying up all the loose ends like they had both died.

Caring takes up all of my spare time, with little leftover to work. When I have been casually employed, most of the money I have earned has gone into caring related expenses, such as transport to visit my parents, or the healthcare costs that exceed their meagre pension. Ineligible for carer’s payments because of loopholes that assert carers must live with the people they care for, I have to solely survive off youth allowance like many other student carers, which leaves me constantly in financial distress.

Physically, the exhaustion of caring is always in my bones. My caring responsibilities limit the sleep I get and leave me constantly picking up viruses or infections in hospitals. I can never feel grounded in a body that is always stressed, always sick and always tired.

The gnawing weight of it all often manifests in anxiety and depression. Dealing with crisis after crisis creates a relentless emotional toll. My caring role has brought an unspeakable sadness and grief. Grief over the loss of my family unit, my home and how things were before. Trauma not from care work, or my mum’s disability, but instead from our treatment by countless services and institutions. Witnessing my mum’s institutionalisation and the systemic abuse she has had to endure has been excruciating. Being repeatedly devalued and demeaned by health professionals and abandoned by support services has made both of us contemplate suicide.

It would be expected that universities would offer support to student carers to ensure they complete their degrees. Instead student carers within higher education have often been left to fend for ourselves.

I cannot think of a single staff member who acknowledged the extent of my caring role, what it meant for my studies, or referred me to appropriate support services after disclosing distressing situations or requesting academic help and extensions.

We have, and continue to be, systematically failed by the higher education sector and our university administrations. In nearly every Australian university there is limited awareness and training among staff, a lack of policy specific to supporting student carers and no available data to analyse the number of student carers enrolled, their success rates and their experiences.

Universities Australia does not collect data on student carers across the higher education system, despite UA playing a pivotal role in commissioning reports on issues affecting student wellbeing, such as the landmark Human Rights Commission report into sexual assault on campus.

When policy, data and awareness don’t exist for student carers, financial support like scholarships and bursaries, specialised counselling and academic support doesn’t exist. We are invisible, alone, isolated and find it almost impossible to stay enrolled.

Our universities need to seriously re-evaluate support for student carers, including explicit policy outlining their strategies. Student carers need access to carer-specific counselling and academic help, and more information and visibility for access plans providing flexibility with deadlines and attendance.

Staff need training as to how to spot and appropriately support student carers, who are often too scared or ashamed to vocalise their caring role. Financial scholarships and bursaries need to be extended so that when student carers face financial crises, they can be supported to stay studying.

More than anything, support needs to be systemic, accessible and centralised so that student carers can easily find help, instead of getting lost in or bounced around endless bureaucracy.

• Crisis support services can be reached 24 hours a day: Lifeline 13 11 14; Suicide Call Back Service 1300 659 467; MensLine Australia 1300 78 99 78; Beyond Blue 1300 22 4636