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‘Universities don’t care about disabled students’: What it’s really like to study with a chronic illness

University, for a lot of young people, is a rite of passage. Although there are endless ways to begin adult life, many people take those first steps by moving away from home and into university accommodations, to experience socialising, cooking, and learning without parental support.

Wardah is 20 and studying Arabic and Politics. She spoke to SCREENSHOT about what it was like to socialise as a chronically ill student: “I’ve had to push myself during freshers this year because I felt very lonely last year. It definitely made it difficult to make friends. People are generally okay with me not drinking, but needing rest is often seen as an excuse for not really wanting to go.”

Wardah’s experience highlights the limits of people’s understanding of illness—for some reason, choosing to remain sober for mental health reasons is becoming normalised yet fatigue is still misunderstood. Declining an invite because you are ‘tired’ isn’t often accepted. People assume that coffee or a Red Bull will snap you out of it, but when it comes to chronic illness, tiredness is actually fatigue—and that simply can’t be cured with caffeine or a power nap.

It takes days to recover from exertion, which also makes the multiple nights out a week unsustainable. Wardah continued, “I can’t have the carefree attitude that most students do. I feel different because of how much planning I have to do for things that other people see as an opportunity to let off steam.”

Isara is 21 and studying psychology. She shared a similar experience to Wardah, “I always push myself too far because I still haven’t accepted that my body has changed. I always drink on a night out, even though it makes my symptoms worse. If I don’t, I feel too isolated and like a sick person who can’t drink or have fun.” It seems the pressure to be well, to be outgoing and a party animal remains rampant in young individuals’ university experiences, despite society feeling like it’s moving past that lad culture that has surrounded institutions in the past.

Although sometimes the social aspect takes over the main experience of university, studying and attending classes is supposed to be the actual point. Universities in the UK all offer some kind of disabled students service, although its quality varies hugely depending on the institution.

There are multiple avenues you can take as a chronically ill or disabled student seeking help, but a lot of them are hard to find. Jamila, another disabled student, spoke to SCREENSHOT about her experience: “There is support there if you know where to look. I am learning new stuff even now, so the signposting isn’t there.”

Many young people also arrive at university with undiagnosed illnesses and experiences. Endometriosis, for example, takes on average eight years to diagnose—for many people who have periods, they may be around 22 when they’re given a name for the chronic pain they’ve been living through. Without words to describe your experiences, and documentation to prove your illnesses, it becomes increasingly difficult to know what you need and what might help you.

Wardah feels that the lack of signposting is purposeful. “I don’t feel supported by my university. I think they’re doing just enough, but I don’t think they care about disabled students,” she shared. There seems to be a common thread throughout the people I have interviewed, the idea that care for their needs comes down to individual lecturers and courses.

Wardah went on to say: “This semester, I have two modules in which the lectures are either not being recorded or are only available online for a few days. Of course, I can’t control the length of my flares or when I need more rest so it’s not particularly helpful to me.”

Enter Jamila, who is now on the other side—as a lecturer, she works with her university to get access needs met both for herself and her students. She explained, “I know there is a choice given to us if we want to record our lectures, relating to intellectual property, which is valid, but if you can’t get into somewhere physically, you are missing out. Again, if you fight for it they may place things specifically for you but access needs are not built in across the board.” And that is the crux of inaccessibility in universities, the burden is left to singular students who are forced to ask for what they need, as an extra, instead of it being the standard to help everyone.

Jamila even said that, as a student, attendance gave her anxiety: “I felt a lot of guilt for not attending, particularly during the first two years when I wasn’t receiving official support from the uni. My attendance was always flagged and I was being pulled up on it.” Attendance at university seminars feels like a hangover from compulsory school education, and measuring a student who is dealing with chronic health issues’ ability to attend classes as equivalent to succeeding at academic work seems ill-fitting.

Society is inherently ableist—chronically ill young people grow up feeling like they are a burden, an annoyance, like they are not like their peers. Such discrimination can, later on, manifest as wanting to blend into the background, to not make a fuss about the things that might make university life less stressful for them.

Many of the introductory lectures you receive when you start studying are about rigorous academic standards, monitored attendance and the consequences of plagiarism. Much of that chatter, although important, can make chronically ill students feel like what they are asking for is extra, is somehow cheating, or asking for an easy route. That just isn’t the case but convincing your peers and your teachers is yet another task you have to undertake as a chronically ill person.

The other pandemic: the crippling mental health crisis in young people suffering from long COVID

Although many have recently been distracted by politicians’ parties and the fact that the whole of the UK is barely coping with rising energy costs and stagnating wages, there is a group of young people stranded in time, left without support or even sympathy, as they learn to adjust to their new lives with chronic illness.

New statistics from the Office for National Statistics (ONS) revealed that 1.7 million people in the UK are currently living with ‘long COVID’. That’s one in every 37. Long COVID appears to be a new phenomenon to many who have not experienced post-viral illness symptoms before, but it is in fact just the latest in a long line of conditions—for example, myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome, currently affects over 17 million people worldwide. So why, if we had known that long COVID was bound to happen too, were we not better prepared?

Someone is classified as having long COVID if their symptoms persist for over four weeks after infection, with most people reporting struggling for over three months to cope with the decline in health since infection. The most common symptoms reported are extreme fatigue, breathlessness, increased heart rate from minor activity as well as inability to concentrate, light and noise sensitivity, migraines and digestive issues. Doesn’t sound like much fun, right? 

In order to accurately paint the experiences and struggles that people suffering from long COVID go through, SCREENSHOT spoke to three young individuals whose lives have been profoundly changed by the virus. Jessica, 25, was an active primary school teacher before catching COVID-19 in late 2021. She was working 60 plus hours a week, rock climbing after work and socialising on the weekend. Until she got sick. “Nobody prepares you for the crippling PTSD that long COVID gives you—suddenly being bed-bound and you getting up to go to the loo feels like the equivalent of having just run a marathon. Watching people around you live their lives, the jealousy was overbearing,” she shared.

Alex was working as a teacher in Madrid, and after a severe case of COVID, has been left with multiple health conditions including focal frontopolar epilepsy and vestibular migraines, as well as the regular long COVID symptoms to contend with. Alex explained, “The hardest transition was mentally accepting that I’m not able to do what I used to be able to do. It has been extremely isolating, especially at a young age, as all my friends are very outgoing and sociable. I can no longer drive and don’t live in London, so getting around is much more difficult.”

Alejandra, 23, is doing a master’s degree in literary studies, but long COVID has thrown a spanner in her plans to graduate. She spoke to SCREENSHOT about the struggle in getting her peers and professors to understand the illness, and the sudden change in her ability to attend classes. “I missed [one professor’s] class six times because I could literally not get up from bed and I sometimes faint so it’s not safe to travel on my own. She has now threatened to fail me if I don’t attend all of the classes that we still have.”

Although Alex, Jessica and Alejandra have all had some form of support from a partner, friend or family member, they reported a severe decline in their mental health since becoming unwell. There is an obvious lack of structural measures in place to tend to the needs of newly chronically ill young people, forced to learn the limits of life with a condition for which there is currently no cure.

When she asked her GP for mental health support, Jessica was sent to therapy where a counsellor suggested she go for a walk or see a friend to cheer herself up. After she explained that she was unable to leave the house or even work, she was told she would have to go back at some point in order to earn money. Thanks for the advice, Captain obvious.

Alex applied for Personal Independence Payments (PIP), a government benefit paid to support those unable to work due to long term illness. He was declined, with the service unable to recognise long COVID as a disability, and therefore ‘truly’ representing an inability to work.

It is this refusal to accept a new generation of young people, disabled by a virus the government failed to control in time, that fuels this second pandemic. Mental illness is a side effect of chronic illness. Science (and the lived experience of thousands of chronically ill and disabled people) tells us that those diagnosed with illnesses such as ME, fibromyalgia, Crohn’s, and now long COVID are at a much higher risk of having their mental health negatively impacted.

It is a mistake to think it is the conditions themselves that cause depression and anxiety. Sure, the day to day life of a person with chronic illness can be mundane, painful and repetitive. But it is the lack of empathy, infrastructure and universal basic income that makes life near impossible.

On 8 April, it was announced that 27-year-old Abhijeet Tavare took his own life after struggling to cope with long COVID. He saw five different doctors before that, who all failed at helping him (unsurprising given the lack of treatment plans or medication available for the condition). In his final letter found by his mother, Tavare stated that he could no longer go on living with the illness.

The young man’s death is a tragedy, and it represents a striking example of the chronic illness-induced mental health crisis that is festering out of the public eye. The NHS is on its knees from yet another wave of acute cases—not to mention playing catch up on years of delays for people suffering from unrelated conditions—all while grappling with slashed funding wrought by punitive Conservative austerity measures. Urgent intervention is required otherwise we face losing swathes of brilliant young people to a new kind of mental health crisis.