A day in the life of a Student Rep with chronic illness

I became a Student Rep because I know what it feels like to be invisible. Chronic illness and neurodivergence often mean fighting to be heard, to be understood, to be believed. I didn’t want other students to feel alone in that. I wanted to be someone who said, “Your voice matters – and I’ll help carry it if you can’t.”

My day always starts with pain. Before anything else, I stretch so my joints don’t lock, take my medication and assess my energy levels. Then I open my Apple Calendar. It’s colour-coded with everything – study slots, committee meetings, rest times, meals, deadlines, and recovery breaks. Without it, I would lose myself to exhaustion and overwhelm.

Because of fibromyalgia and brain fog, I study in small, manageable chunks – usually 25–30 minutes at a time – followed by rest. Beside me is always my favourite tool: my erasable highlighter. I use it to gently highlight anything in my module books or notes that might help with my next TMA. On days when concentration is hard and everything hurts, those highlighted lines are like breadcrumbs left by a kinder version of myself.

Fibromyalgia isn’t just “being tired” – it’s pain that feels like bruises under the skin, exhaustion that no amount of sleep fixes, and brain fog that makes words disappear mid-sentence. Costochondritis makes breathing painful. My back pain makes sitting unbearable some days. But meetings still happen, assignments still exist, and people still need help. So I pause, breathe through the pain, sometimes cry in private – and then I keep going.

One of my proudest moments wasn’t an award – it was receiving a message from a Welsh student who felt unheard and uncertain. They found one of my support videos and said it made them feel seen, informed and brave enough to speak up about their concern. That message meant everything to me.

I’m also proud of the articles I’ve written – pieces that give a voice to students who feel they don’t have one. If even one person reads them and thinks, “Someone understands me,” then I’ve done something worthwhile.

Balancing study and representation is hard – but balancing it while being a mother is something else entirely. My eldest is at university, and my youngest is autistic, has ADHD, and is in his final GCSE year. Some days, I’m writing a Board of Studies report while helping with revision. Other nights, I’m calming sensory overload while my own pain is screaming for attention. Motherhood doesn’t pause for chronic illness – and chronic illness doesn’t pause for motherhood. So I do what I can, when I can, with love, patience, alarms and Apple Calendar reminders.

Working with university staff has taught me that real change doesn’t just come from policies – it comes from stories. When I speak about accessibility, mental health, disability, or representation, I’m not just speaking for myself – I’m speaking for every student who feels too anxious, too ill or too overwhelmed to speak.

Before I became a rep, I doubted myself constantly. Pain, anxiety and autism made me question everything I said. But through committee meetings, emails, writing articles and listening to students, I’ve gained communication skills I never expected.

I’ve learned how to speak clearly – even when I’m scared. I’ve learned how to write in a way that makes people listen. I’ve learned the power of listening to others. Being part of the Open SU community has made me feel less anxious, more confident and more motivated. I don’t feel alone anymore – I feel part of something meaningful.

If you’re reading this and thinking, “I’d love to help, but I’m not well enough, confident enough or experienced enough,” you are exactly who student representation needs. Representation isn’t about perfection – it’s about heart, lived experience and courage.