Ella’s Story

Reflections On University 24.10.2025

My name is Ella, and I am 20 years old, studying for a BSc in Accounting and Finance at Anglia Ruskin University (ARU). Living with Neurofibromatosis Type One (NF1) is a unique challenge each and every day. As I come to the end of my second year, I wanted to share my personal experiences of dealing with NF1 at university: covering the hurdles of disclosing my condition to lecturers and other university staff members, the challenges of making new friends, learning to be independent, and the struggle of getting to lectures.

Reflections on University Life

Looking back over my time at university, I have encountered a number of significant challenges, many of which were directly related to my medical conditions, particularly NF. Living with NF alongside other health issues has often had a profound effect on my ability to engage with university life in the same way as my peers. Unfortunately, one of the biggest obstacles I faced was the lack of understanding from some lecturers and university staff regarding how my condition impacts my health, daily routines, and academic performance. At times, I found it incredibly difficult to approach lecturers and explain my situation. There seemed to be a general lack of awareness and knowledge about NF and the broader implications it can have, not just physically but emotionally and cognitively.

Throughout my academic journey, I experienced moments where I felt unsupported and misunderstood. In some cases, requests for help were met with indifference or confusion, which left me feeling incredibly isolated. This is a common experience for many students with disabilities and it highlights a broader issue within higher education, a gap between policy and practice. While many universities have policies in place to support disabled students, the practical implementation of these policies can vary greatly depending on individual staff members and departments.

Thankfully, there were also moments of real support, particularly from my Disability Officer. Their role was instrumental in helping me navigate the system and access the help I needed. With their support, I was able to obtain exam accommodations, deadline extensions, and liaise more effectively with academic staff. The contrast between my initial struggles and the support I eventually received shows just how important it is to have advocates within the university who truly understand disability and are committed to inclusion.

That said, I still feel strongly that more must be done in terms of disability awareness and anti-discrimination training across all university departments. It is not enough for only the disability services team to be informed. Lecturers, tutors, administrative staff, and academic supervisors all play vital roles in a student’s educational experience. Proper training on disability issues should be mandatory and ongoing, not optional or occasional. Only then can we begin to create a university environment where students with health conditions or disabilities do not have to fight for understanding and fairness.

Over the past few months, my experience has taken a more positive turn, especially as I worked on my Undergraduate Major Project. During this time, I received a much higher level of support from my academic supervisor, Big shout to Dr Lewis who has been incredible and has given me emotional support. I was granted an extension, which allowed me the time I needed to complete my work without jeopardising my health. Dr Leiws also made time for additional meetings, offering guidance and reassurance that helped me stay motivated and focused. This level of support made a huge difference to my confidence and ability to manage a large and demanding piece of work.

One particular challenge I faced during this period was the occasional restriction of access to university resources, such as online journals and digital libraries. These disruptions, although often technical or administrative in nature, had a real impact on my ability to conduct effective research. For students like myself who may already be dealing with health-related stressors, such issues can create additional barriers and make an already demanding process even more difficult. Ensuring reliable and uninterrupted access to academic resources is essential, especially for students working under tight deadlines or specific health constraints.

I also experienced instances of harassment and bullying from fellow students. These encounters were incredibly distressing and had a significant impact on my mental health and sense of belonging within the university community. At times, I was subjected to insensitive comments, exclusion from group activities, and subtle forms of mockery relating to my condition and the academic adjustments I received. What made these experiences even more painful was the feeling that I could not always speak out or seek help without fear of being dismissed or not taken seriously. It is important to recognise that bullying and harassment do not always appear as obvious acts of aggression. They can be subtle, persistent, and deeply damaging. Universities must foster a culture where respect, empathy and inclusion are prioritised, and where students feel safe and supported in reporting any form of discrimination or mistreatment. Addressing this issue requires not only clear policies but also proactive education and awareness initiatives that challenge stigma and promote genuine understanding.

I have learnt the value of exercise, particularly walking for good mental health. I have found some parks and natural reserve spots which help me destress.

In reflecting on my entire university journey, I feel a mixture of pride, frustration, and hope. I am proud of what I have achieved, particularly in the face of considerable adversity. I am frustrated by the lack of consistent understanding and support that still exists within academic institutions. But I am also hopeful. I Hope that by speaking out, sharing experiences, and advocating for change, future students with NF and other medical conditions will find a more inclusive, supportive, and understanding environment.

It is my sincere belief that universities must do more to create spaces where all students feel seen, heard, and valued. Disability awareness training, improved communication, and a culture of genuine empathy are not just nice to have, they are essential! They are essential. With the right support, students with disabilities can thrive academically and personally. I hope that my journey can be part of the ongoing conversation that leads to real and lasting change within higher education.

Reflections On University Life 24.10.2025

One of the earliest and most daunting tasks was deciding when and how to tell my lecturers about my condition each semester. As many people with NF1, NF2-SWN, and Schwannomatosis know, these conditions are not well-known, and I was apprehensive about how they might react or whether they would understand the implications it has on my daily life. I worried about being seen as different or needing special treatment. However, I knew that to receive the necessary accommodations, I had to be upfront.

Approaching lecturers with this information required a lot of courage. I decided to speak to my lecturers after my lessons were over and everyone had gone because I wanted it to be private and for them to understand how NF1 might affect my academic performance. Most (though not all) of my lecturers were understanding and supportive, which alleviated some of
my fears. Nevertheless, the process was emotionally exhausting, and there were times when I questioned whether I should even mention it at all.

I believe that within the first few weeks of starting university, it is vital that you speak to your disability team, as they are very welcoming and supportive. They want you to succeed at university, have a great time, and graduate with a degree. They have put support in place, as well as the Disabled Students' Allowance (DSA), which will help me throughout my studies. I can go to my Disability Officer at university at any time, for example, when I’m having issues with lecturers who are not very understanding of medical conditions, and she will contact them. They may never reply to her, but you have to at least try to get the help you need. My university experience with Neurofibromatosis has been a rollercoaster of challenges and victories. While there were numerous obstacles, each one taught me valuable lessons about resilience, self- advocacy, and the importance of a supportive community.

DSA is an allowance (not a loan) to help disabled students throughout university by supplying technology and support. As I am physically and mentally disabled and can’t walk far, they make sure I have a supportive chair and a computer with built-in features to help me record lectures when I am not well. Disclosing my condition to lecturers was a very significant milestone in my journey through life. Living with NF1 at university has not been easy, but it has shaped me into a stronger, more determined individual. For anyone facing similar challenges, remember that it's okay to seek help, be honest about your needs, and, most importantly, believe in your ability to succeed despite the hurdles.