AHEAD: Association for Higher Education Access & Disability
Creating inclusive environments in education & employment for people with disabilities.


Chronic Illness, Neurodiversity & Self-Advocacy in University

Some days, I find it hard to believe that it has been ten years since I started university. On other days, however, it's completely logical. Being disabled can create an inner sense of being ageless. If, like me, you lost your twenties to illness and chronic pain, the concept of youth or a supposed 'prime' is so abstract that it's almost laughable. I didn't feel that way when I was nineteen and becoming a fresher, though. I remember, perhaps through rose-tinted glasses, actually feeling young when I was beginning university. There is a line in a Taylor Swift song that I love, and when I first heard it, it was almost like feeling nineteen and healthy again, if even for a moment – “Being this young is art.

I didn't know it at nineteen, but upon arriving at my new college accommodation, ready to study what I loved most in the world (creative writing) was art. It was sublime. Art is not without imperfections, and nineteen wasn't perfect either. But I did feel fully and completely nineteen. Now, as I write this, I am twenty-nine.

In the ten years since I began university, I have learned that I am autistic and have ADHD, and I have been diagnosed with two chronic illnesses: Ehlers Danlos Syndrome and Addison's Disease. These are not diagnoses that found me through happenstance. They arose through unrelenting physical and mental pain, near constant setbacks and more than anything, an innate sense that I was undeniably different from those around me.

I knew nothing of my neurodivergent identity or the intricacies of what was physically happening in my body throughout my undergraduate experience, but that didn't stop me from seeking help. It is my hope that by reading this, you will learn all the ways that you, too, can seek help for your disability, along with all the small, daily ways you can advocate for what you need.

Above all, I hope that you will remember that it is your right to experience a life well-lived. Accept nothing less.

 1. Missing Lectures is Not Always Make or Break

I grew up being told I was academically gifted. Now, I realise this isn't entirely true. Yes, there are subjects I am good at, but mostly, I am good at maintaining a high level of discipline for any tasks I must do, including those I don't like. However, because of this and most likely because I was an undiagnosed autistic woman who was also compensating for having the attention span of an ADHDer, I developed a rigid view of perfectionism and the standard to which I should work. In college, this translated to attempting to make every week a 'golden week' where I missed no lectures. This standard became increasingly challenging to maintain as my health declined further, but the sicker I got, I still didn't adjust my standards. Instead, I just used my fluctuating attendance as proof that I was, once again, a terrible student and not cut out for college.

If I could go back, I would place my hands on my shoulders and tell myself that missing lectures can be a strategic choice and, at times, a positive one. People will say to you, as though it is obvious, to choose your health above all else. What these people don't understand, however, is that when there is no end in sight for your pain or suffering, the typical standards of when to stop and care for yourself fall away. This confusion is only amplified if you are an ambitious person. So, I advise reframing what it would mean to you to miss lectures. Move your absence from an indication of failure to an indication of intelligence. More than anything, trust yourself. Trust that your academic decisions are sound.

 2. Disclose Sooner Rather Than Later 

As I was not diagnosed in any sense during my time in college, I felt unable to disclose my struggles. I felt I had no credibility or legitimacy in asking for help. I suffered through almost two semesters before I asked for help or even expressed an ounce of the discomfort I was experiencing on a daily basis in college. As soon as I did, I wished I had done so sooner. The Disability Service was able to help me regardless of my lack of a diagnosis, and the support I received was transformative.

You may not be able to verbalise your challenges and struggles. After all, they might have become so familiar and painfully routine to you that putting them into words is almost impossible. If you need to, bring someone else to your appointment or write down your thoughts before the appointment. Mostly, go easy on yourself if you hesitate to speak or stumble over your words - in an ideal world, you would never have to contend with this.

 3. Express Your Pain Without Shame 

I know this one is a tall order; even as I type it, I know it. When you are gritting your teeth and trying to behave as 'normally' as possible while also trying to have an experience that the world considers quintessential, openly admitting that you're struggling can feel counterintuitive. For a while, I felt this way. Even after I had sought help from the student medical unit, student counselling and the disability service, I did not share my day-to-day struggles with those who mattered most to me - my friends. I smiled, laughed, went on nights out, pretended, faked, and lied. I had to, I thought. Otherwise, I might fall to my knees and stop being able to keep up my everyday magic act – the illusion that I can do this.

I didn't start telling people about my problems like one big TED talk. Instead, it was like ice, splintering and breaking - it happened in stages. By the end of my second year, I had learned a vernacular to speak about my illnesses and differences, and this practice made all the difference. Yes, expressing myself to those from whom I sought support was helpful, but more than that, it was empowering. Not only could I speak, but I could also advocate. This skill has only grown over time. So, start where you are. Explain what you can. Communicate what it is that you understand and know that no conversation about your needs has to be ever truly ‘finished’. As life goes on, your needs will change, and so will your ability to communicate them.

 4. Access Mental Health Support ASAP

When I was going to university in 2013, the conversation surrounding mental health was present and skyrocketing - but a hesitancy remained that I do not see in the frank, honest ways in which Gen-Z seems to communicate their struggles. We spoke candidly to each other about our struggles, but not to everyone- just the trusted few. And this was progress from our parents' generation. As a result of this hesitancy, I categorised my struggles into separate universes. Yes, I had a chronic illness, but that was a standalone issue, right? It couldn't possibly leak into the rest of my life, turning my entire worldview a dark, navy hue of depression. In the end, it took me several months too long to ask for help and as a result, by the time I stood inside the student counselling building with a fresh prescription for anti-depressant medication in my bag, I was an empty shell. How could I speak and express myself when I had not only waited until I was on my knees to ask for help but when my face was in the dirt, thoroughly defeated by life? Ultimately, I made the long walk back from the void of feeling nothing, but I genuinely wish I had not had so far to walk. So, please - ask for help when you first need to speak with someone. It is an already overdue necessity if you are thinking about it, no matter how idly.

 5. Kick, Scream and Shout in Frustration 

When I was a child, and my father would come home from work with the weary weight of adulthood resting on his shoulders, he would tell me that I should relish my time in school because these were among the best years of my life. These conversations only increased in frequency when I began university, and I would ring home, speaking about house parties, warm libraries, and student discounts. Admittedly, I never countered this sentiment when talking with my dad, but over time, it began to feel not just untrue but infuriating. How could this be my prime? How can I continue to put one foot in front of the other if I know that life only worsens from here? And worse still - does living within the joyful and innately privileged environment of a university discount my genuine pain? For a long time, I thought so.

I wish someone had placed their hands on my shoulders, looked into my eyes and told me that I was right to rage. To want more than the hand I have been dealt. I wanted someone to tell me that acknowledging pain does not make me ungrateful for the moments where pain is absent. Cry if you need to, scream if you have to and more than anything, feel and never stop feeling. Perhaps that is the real definition of living and living well. Feeling and feeling fully.

Guest Blog Author: Jennifer PoyntzBlack and white photograph of Jennifer Poyntz wearing glasses and smiling at the camera

Jen is a graduate from the University of Galway with a Bachelor of Arts in Modern Languages and Creative Writing. She has since completed a Master of Science in Disability Speech and Communication Skills which highlighted her interest in narrative studies, particularly in the context of autistic adults. After completing her MSc, Jen began advocacy work with the neurodivergent and disabled communities, whilst completing her Postgraduate Diploma in Personal and Business Coaching from University College Cork. Her interest in neurodiversity stems from her own dual diagnosis with ADHD and autism.

Before joining Trinity’s Disability Service, Jen worked extensively over the past five years with Intel’s Creative Science Foundation (CSf) as Creative Consultant, where she writes creative and academic science fiction papers and stories. Jen explored her passion for teaching by working with Kerry Education and Training Board, hosting, and facilitating literacy workshops and programmes for a diverse range of communities. After completing an advanced diploma in Narrative Fiction at New York University (2021) and taking part in Yale University’s Summer Fiction Programme (2023), Jen began her PhD at the University of York in English Literature and Creative Writing which she is currently completing. Jen’s research interests include the representations of neurodivergent individuals in popular media, disability studies and the intersectional nature of neurodivergence (queer studies, feminist studies etc). Jen currently runs her own blog and is constantly writing novels, short stories, and poetry.

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First published June 2024.

Creating Inclusive Environments in Education and Employment for People with Disabilities

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