Studying with Epilepsy, Depression and Hemiplegia

Contents: Everyday student life, obstacles, needs, strategies, call to action.

The transcript was compiled from interview recordings. The text has been edited and refined for clarity. It was then reviewed and approved by the participating students.

Trigger warning: The following interview contains ableist content. This includes discriminatory language, derogatory portrayals and topics relating to the exclusion and discrimination of people with disabilities. If you feel this applies to you or causes you distress, please only continue reading if you are feeling well at the moment.

To begin with: What do you particularly like about studying at Bielefeld University?

That you can sit exams as often as you like. I enrolled in the 2019/2020 winter semester. My entry mark wasn’t that good, so I was really pleased to be able to study at the best university for sociology without having to meet an entry mark. That took a lot of the pressure off me. Here at the university, you can also sit exams in subjects like statistics as often as you like without failing. For me – alongside the ZAB – that’s a very important aspect of a university. Given the existence of such a support service, it was naturally clear to me that students with disabilities are well-supported here.

Did you find out before starting your degree which support services were available at the respective universities?

No. During the induction week, I sent an email straight away to the departmental student representative committee asking who I could contact if I were to face discrimination because of my disability. I then received a reply listing various points of contact, including the email address “diskriminierungserfahrungen@uni-bielefeld.de” and the accessibility services (ZAB), as well as a reference to disadvantage compensation. That was very, very helpful. To be honest, though, I didn’t realise until quite late on that I could actually apply for disadvantage compensation. Before that, I hadn’t sat any exams, only seminar papers, and I’d always been able to sort that out with the lecturer. With the upcoming exam, however, it was clear to me that I’d need breaks. If the exam takes place in the morning, I take my tablets and then experience side effects – which, up to that point, had almost always happened – then I need a break so that I can still sit the exam.

I think I realised as early as my first semester that I have to study at a slower pace than others. After putting together my timetable with a standard workload, I realised it was far too much. Within two weeks, I had three assessments: two written exams and an essay. During that period, I also had exactly three seizures. I have epilepsy. It then dawned on me that I was sleeping poorly because I was stressed, and that this was triggering the seizures. At that point, I pulled the emergency brake and realised that I’d have to plan my semester around my exams.

How many exams can you realistically sit at the end of the semester?

Seminar papers are fine; they don’t stress my brain. It’s a completely different story with exams. You could say: every written exam, one seizure. That’s exactly what happened in the second or third semester with statistics. Eventually, I managed to sort it out by scheduling more rest periods, preparing better for my revision and thus avoiding stress-induced seizures. However, this meant I fell behind the standard duration of study and am therefore already in a higher (tenth) semester. To be honest, it does weigh on me, but it really depends on my mental state. If I start a semester feeling well-rested, I’ve got loads of energy, and then I pack five modules into my timetable, all of which have a heavy workload. Then I’m well aware that my energy levels mustn’t dip. I can’t let myself get stressed, and I mustn’t mess things up in my personal life either, otherwise I’ll be completely knackered. I might get through the semester, but I won’t be able to sit the exams because I’m too stressed, haven’t studied, or for some other reason. That’s why I’ve taken a lot of courses without actually sitting the exams.

Are the rest periods you’ve just mentioned already integrated into those study periods?

No. I need my days to be very structured. An hour and a half before university starts, I need a bit of time where I can relax and have my coffee without constantly having to check the clock. In the mornings, I need a good start to the day, where I can have breakfast, have two cups of coffee, switch on the telly for a bit, and simply be able to start the day calmly and relaxed before heading off to uni.

In the evenings, I’m on my sofa every day from 8 pm. I have a chat on the phone with my boyfriend, have a lovely evening and watch my TV series. I always need that too. I’m also very strict about making sure I get at least nine hours’ sleep. I sleep very poorly, I have to say – I use melatonin spray to help me fall asleep. But I also have trouble sleeping through the night, and my body won’t let me sleep past about 7.30 am, no matter how late I go to bed. When I’m stressed, I know it always gets worse, which is why, for example, I didn’t go to uni yesterday either, because I knew I’d had lots of work-related events over the last few days. It was all very noisy, there were lots of people there, and I was standing around the whole time. On Wednesday, my body had already signalled to me that I should stay in bed – but I had to go to work and couldn’t just stay in bed. So I promised myself I’d stay in bed on Thursday. I then went to bed at nine o’clock on Wednesday evening and slept for 12 hours. I felt as though I’d otherwise collapse. I’ve been resting today as well, because I simply need this long period of recovery – I wake up three times a night. Then I have to convince my brain to fall asleep again. My whole day is structured around that: ‘How well did I sleep?’ That, in turn, determines how well I cope with the upcoming seminars. My day is usually planned as follows: seminar, work, seminar. In the evening, I’ve got physio. Then I’ve got to cook something and so on. It’s a long day.

It’s also worth bearing in mind that for the last six months, I’ve had nothing but stress in my shared flat. That’s settled down now, but it was just so stressful. Stress which, in turn, drains my energy reserves. On top of that, I’ve failed my statistics exam for the second time and realise it’s not worth sitting it again now. Partly because of additional work commitments, I’ve fallen four weeks behind in the statistics seminar and can’t make head nor tail of it anymore. I’ve come to the conclusion that I don’t need to go back to class because I won’t be able to catch up anyway. I felt like I was on the verge of a burnout and didn’t do anything for two months. The fact that I’ve now completed a semester that was, so to speak, a complete waste is devastating.

Do you have any strategies that help you cope with the ‘perceived’ backlog?

Well, I’m actually fine with it myself, because I know I’m working and earning a bit on the side – though I’m still being supported financially by my dad. And my whole family …, well, the first thing they ask me is:

‘So, how much longer are you going to need?’

And then there’s this lack of understanding. ‘Hey, I’m suffering from depression. I just don’t have the energy for it.’ And: “Yeah, OK, statistics is a struggle for me. I’ll have to do it again.” And then there are personal reasons too, which I don’t want to tell my family at all. And then I have to sit there at the kitchen table in front of my dad, crying to him about how knackered I am, just so he’ll say: “Right, I’ll pay for your eleventh semester as well.” He then said that I might have to finish my degree – that he wouldn’t send me any more money from the tenth semester onwards. That would be devastating for me, as I only work nine hours a week and don’t get any BAföG either. Exactly, that’s why it’s always so difficult with my family. Otherwise, they wouldn’t have a problem with me studying for ten semesters. The pressure comes more from outside.

And how many seminars do you take on each week?

Well, I’m currently doing a self-study module which takes up quite a lot of my time. On top of that, I’m taking the methodology and theory seminar, and I’ve also got two sociology seminars where I have to read two books. On top of that, there’s the coursework. I’ve got very practical seminars this time round, which is why I actually only have to write one seminar paper as part of a pair assignment. And just an oral exam – but that’s it. I’ve been very careful this time to avoid having to write any seminar papers.

Didn’t you say that seminar papers stress you out less?! Why are you trying to avoid them?

They don’t stress me out that much, but I’m very good at putting things off. Then I end up procrastinating, and with an oral exam, it’s simply over and done with. That was important to me this term. But I’ve now got a whole study planner for the entire month. It’s a clear table that helps me organise my daily (study) routine. It covers the whole term. In each individual box, I write down what I need to get through on that particular day – which text I need to read for the next session, coursework I need to complete, or when I should start preparing for exams. But I also enter my work and personal appointments, as well as my days off. For example, this semester I’ve kept two full days free – I don’t have any university classes on Mondays and Wednesdays. Those are my study days.

I also use different text colours to indicate whether I’ve completed the task for the day or week, or whether I need to set aside more time for it. This semester I have a heavy workload, which is why I can’t afford to skip or postpone anything. If I did, my entire monthly schedule would be thrown into disarray. However, sticking to my plan without compromise only works if I take my resources into account (whether I’m experiencing side effects or finding it hard to concentrate, in which case it’s pointless). During the semester break, on the other hand, I only set aside enough time for my seminar papers, but I also allow myself to relax, as I wouldn’t be able to sustain this constant work mode forever, and relaxation and recovery are essential for me to be able to perform at all.

Would you say that your need for planning certainty is linked to your disability or condition, or is it more of a personal preference?

I need structure so that, when necessary, I can also make time for breaks. For example, I might soon have to switch medication, which will put me out of action for three weeks. That needs to be planned properly. But I must also say that I really do enjoy planning. I don’t understand people who don’t have plans. They stress me out … I plan so that I can keep track of things, make the most of the term and stay disciplined. My aim is to pass every single exam this term so that I can finish in perhaps two years’ time – I’ve got to finish at some point, after all.

So for you, it’s primarily about managing the academic workload rather than balancing it with your disability or illness?

It’s more about discipline, and that works really well. Sometimes I even get through things quicker that way. I have to say, I actually used ChatGPT a lot for a while to have texts summarised for me. So if I’ve got a 28-page text, I’d be stuck on it all day. I’d get ChatGPT to summarise the text for me, including the thesis, arguments and the key points – basically, what the lecturer wants to hear afterwards. I was then able to get through these texts quickly, which made my self-study easier. But I’ve moved away from that now. ChatGPT is quick, but it makes lots of mistakes and comes up with nonsense. I can never be sure whether things are presented correctly in terms of content or whether parts have been omitted. Checking up on mistakes, in turn, is time-consuming. Furthermore, its use isn’t permitted in examinations, and I’m very cautious about that. Another aspect is that using AI isn’t good for the brain, memory or one’s own thinking (it’s called ‘cognitive debt’), and it’s important to me not to hand over my thinking to a machine – especially as I’m so aware of the ‘downsides’.

At this point, however, I must add that I’ve always read books myself. It really does come down to what you use ChatGPT for.

Would you mind describing what a typical day at university is like for you?

It actually starts with a good, long sleep, because that’s very important for my epilepsy. The following three factors are the real killers: alcohol, drugs and sleep deprivation. It’s not that you can’t have a drink at all, but you do need to be careful. And you need to make sure you take your tablets regularly. As I’ve already said, it’s always important for me to start the day in a relaxed way. That means: every morning I set aside one to one-and-a-half hours to sit on my sofa with my coffee by my side and have breakfast. Completely relaxed in front of my telly, where I don’t have to think about all my to-dos straight away. Then I pack my things, get dressed and leave the house. I live very close to the uni, so I can walk there. I always arrive 15 minutes early, because otherwise you won’t get a seat in certain seminars. If I can’t get a seat, I can’t really participate, which means I don’t listen, only catch half of what’s being said and can’t take any notes. Take my Tuesday or Thursday, for example: I have a reading seminar where we sit in a circle and discuss a current chapter from a book. That’s about two hours during which we interact with one another – a seminar that doesn’t really exist in that form at university. Otherwise, it’s always just lecture-style teaching along the lines of: ‘Here’s an assignment for you; we’ll go over it now.’ But in this case, the lecturer says: ‘We’re going to sit down together now and reflect on this text.’ After the reading seminar, I work until the next seminar starts. Then I sit through two hours of lecture-style teaching in a windowless, stuffy room. After that, I’ve had enough and usually go home, do some shopping and make myself a meal. Then my day is over. On the days I have university, I don’t have to do any preparatory or follow-up work, because I’ve spread this ‘university work’ out over the other days, so to speak.

After this interview, I’ll head back to my seminar, as we still have a major film project to complete there. We’re a bit swamped with it at the moment, so I’ve got to get back there straight away. The project outcome will also count as my exam mark, which means I won’t have to do any further work for the seminar afterwards. And it’s just really exciting.

It sounds as though you’re currently taking some very time-consuming and labour-intensive seminars?!

Yes, I am. It was important to me to complete the module I mentioned this term. I’ve made sure that the seminars aren’t just about working with texts and writing seminar papers, but about topics that I find fascinating.

Would you say that you particularly enjoy seminars where the typical methods (such as lecture-style teaching) aren’t used, or where alternative topics are covered?

Yes, well, I couldn’t choose a seminar that wasn’t labour-intensive but which didn’t interest me at all – it has to be exciting and stimulate my mind. How else are you supposed to write a seminar paper? I’d much rather go the extra mile and, for example, look into how we can make the materials we produce accessible, than have to deal with content that doesn’t interest me.

Are there any seminars you don’t attend because of their timing?

Yes. I attend everything from ten o’clock onwards and try not to book any after 4 pm. That’s my time, and I’m quite strict about it – I’d rather do three seminars back-to-back, one after the other, than have a two-hour gap. I know from my own experience that, even if I’m hungry, I wouldn’t go to the university canteen. I actually find the university canteen dreadful.

Could you explain why you find the university canteen dreadful?

It’s simply because there are endless queues of people in the university canteen. Everyone’s crammed in, and everything has to happen quickly. I then have to hold a tray with both hands, which doesn’t work with my hemiplegia. I then have to sort of do everything at once. On top of that, there might be someone jostling behind me; it’s absolutely noisy, it’s all cramped, and you have to concentrate on eating in a massive hall. Nah, I’m not doing that. The West End is the best I can manage.

What would it take for you to be able to go to the university canteen?

Well, I reckon a university canteen would be great for people who get overwhelmed by sensory input. Somewhere where it’s a bit more relaxed and maybe not set up as a buffet. I generally find buffets very difficult. Because you have to balance that tray and then the Coke falls off, or the plate ends up tilted to one side…

In the university canteen, there’s a button you can press to let the staff know you’d like some assistance. Have you ever tried that?

I’ve actually never even thought about pressing that button, and I’d be worried they’d think: ‘Well, she doesn’t really need any help. She can actually do everything.’ When I go to the university canteen, it’s really only with other people and only when I absolutely have to. That’s why I have a good breakfast and why I eat straight after uni. By then I’ll be hungry, so I’ll cook myself something. I just don’t like it when there are lots of people milling about in one place.

In the past, for example, even going shopping used to stress me out – especially those situations at the till. I’d always think to myself: ‘OK, packing and paying at the same time is really stressful, and then the [cashier] sees that I’m holding my wallet differently and so on, and then she gives me change, and I have to stuff it in there’ … that’s why I only pay by card.

Now I can actually pack my shopping in a completely relaxed way, as I’ve trained myself out of that nervousness, but I used to be much more on the ‘anxiety track’. My social worker had to teach me how to go shopping without getting stressed. I can do that now. The same went for making phone calls. Even today, I still write little notes to myself, like: ‘How does the first sentence start?’

But I have to say, the pandemic had a huge impact, because I’d actually managed to overcome all that nervousness. I wasn’t afraid any more of speaking in front of people or giving a presentation at school. Then the pandemic hit and my ‘social skills’ vanished. Especially at uni, the fears came flooding back. Thoughts like: ‘Oh God, what, you have to chair a session! You have to speak in front of people! Oh God, what are you on about? You can’t do that!’ That’s why, for example, the conference I recently attended for work took a huge mental toll on me. I’d never say that out loud, though, because I’m afraid people might think I’m not up to the task. I am up to the task. I just have to work really hard to ensure that people can’t tell I’m actually absolutely terrified. That’s why it was so important to have a colleague by my side at the conference. Of course I would have gone on my own, but the stress level would have been completely different. I reckon I drove my boyfriend mad for three months – actually, everyone around me.

And then I was at this conference, and it was all pretty chill. And I thought to myself: “Oh, right, hmm.” But I was also really glad that it was just a poster we were presenting. Giving a presentation to researchers – to people who know more than I do – is quite intimidating.

Does talking to others help you in moments like that?

Yes. And all that preparation, like:

• What shall I wear?
• How does a symposium actually work?

I even asked my dad how symposia work, like:

• What’s it like?
• What do you do there?
• What’s the programme like?

I planned every step in detail:

• When do I need to get up?
• When do I need to have breakfast?
• When do we need to set off?
• Which underground line do we take?
• When will we arrive?
• How long will it last?

But I have to say that the fact I wasn’t on my own was brilliant. I’ve also said that I’d love to do it again, but not straight away, because it really took up a lot of my energy.

Earlier you mentioned that the pandemic really threw you off track when it came to your ‘social skills’. How did you find your way back? Did you just keep throwing yourself in at the deep end, or did you use specific strategies?

I actually went to a convention. I used to be a huge Supernatural fan, and I thought to myself: ‘You’ve got massive social anxiety. How do we solve this problem? — Well, you go to a convention.’ I bought a ticket and went there on my own. That was the aim: ‘I have to talk to people’. I did that again after the pandemic. And of course, it has its… I wouldn’t recommend it, let’s put it that way – for various reasons. It’s far too expensive, a bit lonely and involves a lot of waiting around. But for me, it was a case of taking the plunge. There are loads of people there who are absolutely lovely. But you also have to be aware that if you go there on your own, you always have to make the first move and talk to people. Otherwise, you’ll just be standing there on your own.

When we were talking about the symposium, I gathered that planning and going through all the possible scenarios is a sort of strategy you use…

I used to be really good at imagining the worst-case scenarios. I’ve broken that habit. But I used to make a plan for every scenario. Really, for every single one. And then I got into the habit of asking myself: ‘OK, you’ve made a plan for every eventuality. But one possibility would also be that everything goes well.” I’ve got used to this approach over time, and then this ‘always planning ahead’ sort of eased off. It’s still there, mind you, but it stays within realistic bounds. It’s no longer along the lines of: ‘What if the house burns down or something?’

So you now limit it exclusively to organisational planning?

Well, obviously with trains and so on, you always have to factor in Deutsche Bahn. In those situations, that forward planning – and having a Plan B, in a way – is very important.

To come back to your studies now. What were your most formative experiences – both positive and negative?

Yes, well, I think the most negative thing was, above all, that one situation in a language course. That was, I think, two semesters ago as well. I was mentoring a blind student, and we were in the same language course. The lecturer was ableist – very ableist. It was obvious that the student couldn’t see. And the lecturer said: “Why don’t you read out the question on the board, please?” This went on throughout the entire course. So I tried to explain that she couldn’t do that and asked if the lecturer could take that into account. I also took on the task of reading aloud, but the lecturer also handed out worksheets with very small print, which I found difficult to read – and I wear glasses. It was simply a very, very long and really stressful term. My mentee and I were completely exhausted after every session – partly because I had to do the work for both of us. I was then seen as a personal assistant, even though I’d made it clear several times that I wasn’t. I then had several discussions with this lecturer, during which I said that accessible teaching is a right. I was told in response that the student had to compensate for this themselves. As if! It’s her disability, after all, and I have to make allowances for the other 20 students somehow.

So I wrote a four-page email to diskriminierungserfahrungen@uni-bielefeld.de, with the Representative for Students with Disabilities and Chronic Illnesses copied in, and this led to a meeting with the person responsible for that email. Nothing came of it. I subsequently found out that this had apparently happened quite often before and that they’d never even heard of disadvantage compensation. I was then told to please write an email to my lecturer’s line manager explaining how the whole process works. As a result, my mentee and I withdrew from the course and did not sit the exam or complete the coursework. We weren’t going to put up with that. But it was good to know how to stand up for ourselves.

Also because there are support services you can turn to?

Yes, and because I’d experienced a situation of discrimination before and so knew exactly what to do should something like that happen again.

Are there any positive experiences you can and would like to share?

Yes, plenty in fact. I have to say that, apart from that one lecturer and one other, I haven’t come across any lecturers who’ve reacted in a really stupid way.

But apart from that, I’ve only had lecturers who were very understanding and flexible – really laid-back. I once had a rather odd situation with a lecturer where he said: ‘Yes, I’ll forget that you have epilepsy, but if you have a seizure, I’ll remember it again.’ That was it.

Do you generally speak openly about your medical conditions or your disability?

It depends. Well, I usually just say that I have epilepsy. This term, though, I’m not really doing that because I can’t be bothered. That can also cause uncertainty amongst lecturers time and again. I then have to explain to them, in a way, what a seizure would look like. Admittedly, it’s unlikely that something like that will happen, but at the same time I want to be sure that – should it happen – people are informed. It’s actually really scary, because in moments like that my body sort of rebels against me. I can’t do anything then and am completely at the mercy of others. I simply don’t want to be taken to hospital either, because that would just be unnecessary.

What criteria do you use to decide whether or not to tell them?

I usually mention it in the second week, because in the first week I’m assessing the lecturer. Are they a decent person? Can I approach them? If I get the feeling that the person is – let’s say – difficult to get on with, then I drop out of the course. I once had a lecturer who said: ‘If you have children, I don’t care. If you’re not here, I’ll fail you.” That’s when I personally decided to pull the plug. I could already picture myself running after him to tell him that I have epilepsy. I just don’t feel comfortable in that sort of situation.

This term, though, I’ve got really lovely lecturers. Although I have to say that I’ve still decided against telling them. People somehow always end up looking at you differently.

In the sense that you’re treated with caution?

Actually, my perception is still very much shaped by experiences I had during my voluntary social year. I worked in a library there and, right from the start, openly communicated that I have a disability as well as epilepsy. As a result, I was treated as if I’d dropped a bombshell. They told me straight to my face: ‘Our colleagues are afraid of working with you.’ And: ‘You’re actually a very nice person – if only it weren’t for your disabilities.’ Because of this incident, I contacted the anti-discrimination officer, whereupon my mentor was rather annoyed and accused me of not having sorted it out internally. She also held it against me that I’d told her about this incident in confidence and that she would now have to lie to her boss. As a result, she stopped supporting me, as it would no longer benefit her personally. That really left its mark… 

Fortunately, my current employer is more understanding. I can openly say, for example, that because of my disability I’m unable to help with carrying things. I don’t have to worry that someone else – someone who doesn’t have a disability – will snatch the job away from me. But it’s precisely with this attitude, with this fear, that I approach working life.

Does that fear also apply to university life?

Yes. I started my degree during the pandemic. For three semesters, I didn’t have to tell anyone about my epilepsy, and then we went back to face-to-face teaching. That’s when I was confronted again with the issue of communicating about my epilepsy, and with the realisation that I’m doing it for my own safety. That’s always the focus. It’s for my own safety. To make sure they don’t drag me off to hospital, that they don’t do anything to me if I have a seizure. I still remember various reactions from my school days. Everything from ‘please stop faking it’ to teachers having panic attacks – I’ve seen it all.

If I’m completely honest, the seizures I have when I’m on my own are the most relaxed. Then I don’t have to worry about calming those around me down as well. The more I have to strain my brain to communicate with those around me, the worse my seizures get.

Would you mind telling us what you need at the moment of a seizure, or rather, what you’d like people who witness such a seizure to do?

Well, I can only give about 30 seconds’ warning that I’m about to have a seizure. I usually know this because my right hand starts to stiffen and my field of vision shifts upwards. What I’d prefer is for people to look at their watch and note down how long the seizure lasts. Most seizures last between three and ten minutes, but I can’t estimate the time myself. During a seizure, I might also fall over. Most of the time, though, I’m sensible enough to sit or lie down – most of the time. It would be great for me if someone could just stay with me. After a seizure, I can’t walk for about five minutes and my right arm is still very stiff. Even so, I don’t need to go to hospital until I say: ‘Hey, I’m getting really scared right now, please call an ambulance’. Most of the time, though, that’s not the case. The fear actually just comes from the fact that I can’t gauge the time, and after 30 minutes my brain suffers damage. I’d simply be afraid of losing even more of myself.

Would you prefer people to talk to you during a seizure, or is it enough for them to stay within your field of vision and show they’re there for you?

Well, I definitely can’t reply to you during a seizure. Of course, encouragement is always good, but I don’t really expect that much from those around me, because I know that as long as there’s no panic, that’s good enough.

In short, anything that helps you focus on yourself rather than having to think for others as well is helpful.

Exactly.

Are there any other needs you have when it comes to accessible higher education? Earlier, you’d already mentioned online teaching during the COVID-19 semesters. Is that a format you find appealing – especially given that you feel very comfortable in your familiar surroundings?! Also with regard to seizures.

Nah. I actually find online teaching dreadful. I mean, sure, it’s kind of great sitting in bed in your pyjama bottoms, but when it comes to interaction and learning, being together in person is much better. I’m much more inhibited about saying anything on the screen, and I also find it easier to pretend I’m not there. In face-to-face sessions, I can read my fellow students’ facial expressions much better, and there’s also much more interaction. Of course, it always depends on how many people actually turn up. 

Another need stems from the fact that I can’t stand for long periods – even if I don’t always admit it to myself. Sitting is simply much more relaxing, though. Apart from that, I don’t really have any other needs. I can walk well, see well with my glasses and hear well. Apart from my epilepsy and the need to wear glasses, everything’s fine with me.

Addendum from the student: I’ve never really admitted to having any special needs. But when I think about it, my memory is rather unreliable. So it really helps me to have notes to hand. I also like to get an early overview of the length of texts and assignments so that I can manage them more effectively. Another thing that might be worth mentioning is that I perform better at certain times of the day.

In exams, it also helps me to manage my time better and to take a break, which isn’t deducted from my working time. My epilepsy is going through a really quiet phase at the moment, and I haven’t had any side effects from the tablets for quite some time now – no matter what time of day I take them. Previously, if I took my tablets 30 minutes late, I’d experience side effects about an hour after taking them. This meant I could no longer see properly; my field of vision would shift from top to bottom. I’ve got used to it now – I can even walk whilst it’s happening – but reading or writing is impossible. That’s why working on a computer can sometimes be very difficult for me. On top of that, there’s the variant where I get dizzy and can’t really walk properly. The floor then sways as if I were on a ship, which makes me feel sick. I even had to be picked up once because of these side effects. But as I said, the nausea is relatively rare. The issue with my field of vision is more common. Generally speaking, I haven’t experienced it for some time now – regardless of when I take my tablets. I don’t know what my epilepsy is doing to me at the moment, but I reckon it’s thinking: ‘You’re under so much mental stress right now that we’ll just deal with the physical side of things afterwards.’

So the restricted field of vision is solely a side effect of taking my tablets late?

Yes. It’s very annoying because I can’t recognise people anymore. I end up walking quite differently because I can’t judge distances to objects properly either. So when I have side effects, I never walk home. I’d be afraid to crossing the road, as I consequently can’t judge where a car is or how fast it’s going.

How long do these side effects last?

It can take quite a long time. Usually, it’s best if I lie down for an hour. But as that’s often not possible, it lasts anywhere from one to three hours.

Would having a quiet room where you could rest help you in such situations?

Yes, I’d really appreciate that. To be honest, though, I’m not sure if, in the heat of the moment, I’d actually think to look for a quiet room where I could lie down for an hour. Still, it would be helpful.

Do you make use of the loungers in the libraries every now and then?

Well, I usually just sit there for a bit longer with my eyes closed and have a drink – drinking is important too, and can sometimes help in itself. But I must also point out that I’m not always very kind to myself. Although I do have resources available to me, I don’t make use of them because I usually don’t allow myself to acknowledge just how bad things really are at that moment. 

To come back to your day-to-day student life: do you have any wishes or ideas on how your day-to-day student life could be made easier?

No seminar papers and shorter essays. Seminar papers actually put me in a real dilemma. Whilst they do offer a great deal of flexibility in terms of time, in my opinion this also brings with it rising expectations – and this pressure to meet those expectations paralyses me. I end up thinking that every thought I have has already been thought through more thoroughly by someone else. I simply don’t know what to write and give up. Of course, all I really need to do is prove that I can write a seminar paper, but those are just my thoughts. Then I push it all aside. I’ve often written seminar papers in four days – but at the moment I’m putting off one that I’ve been meaning to do for two years, because I don’t have a deadline. That’s why I find seminar papers more stressful than exams. With exams, you do have to cram a lot in a short space of time, but they’re over quickly. That’s the positive side of it. Oral exams, on the other hand, are a different matter altogether. I’m scared of oral exams because I’m afraid I’ll forget everything in that situation – my memory isn’t that good. I’m simply better in seminars because I sit there with my laptop full of notes, and that gives me confidence. Plus, I’m not sitting there on my own.

Would you like to fill in the blanks in the following sentence: “Many people think that … and I’ve always wanted to tell them …”?

Many people think that disability is a deficit, and I’ve always wanted to tell them that my life, as I live it, is different from theirs, but that I’m very happy with it.

In this context, I can’t help but think of my granny. My granny is ableist. To provide some background, I should mention that my mum has passed away, and I’m my granny’s only granddaughter. My granny pities me from head to toe:

• “Oh God, what a cruel life.”
• “Your mum’s dead and you’ve got a disability on top of that – you’re so unfortunate.”
• “People like you shouldn’t even have been born.”

I just can’t talk to her because I’m at a point in my life where, although it’s still a struggle to come to terms with my disability, to accept myself, not to compare myself with others and not to think that I’m worth less, I’m happy as long as there are no negative influences. My degree is interesting, I’ve got a boyfriend and a job. I’ve got the support I need, and I’m simply at a point where I’m genuinely happy. I simply can’t understand how anyone can look at a life they really know nothing about and say that everything is rubbish. That’s why I’ve never been able to talk to my granny about disability, because I know her attitude. That’s always been a defining factor. So much so, in fact, that I’d say every week I spend with my grandmother sets me back in my personal development. My father, on the other hand, thinks I’m not independent enough, that I should be denied the help I legitimately need – and will always need – so that I can become more independent. I’ve actually always wanted to tell him that a legitimate ‘I can’t do that’ and ‘I need support’ isn’t solved by withholding help. All I learn from this is that I can’t ask for help, because the answer is ‘no’ anyway.

Addendum from the student: Many people think that achievement and success in the job market are the greatest goods in life, and I’ve always wanted to tell them that time is the only resource that cannot be renewed, and that one should use it to be happy.

Is there anything you’d like to share with or say to lecturers – perhaps in light of the experiences you’ve described?

Plenty. Firstly, they should make it a priority to engage with the issue of accessibility and pay more attention to making their teaching accessible – even if no one actively relies on it. Simply because it’s good for everyone and also much more comfortable. It’s also important to realise that you can’t always tell by looking at a student whether they have a disability or a medical condition – visibility isn’t the only measure of legitimacy. You can’t tell straight away by looking at me either, and I don’t want to feel under pressure to have to prove my disability or medical condition in order to be entitled to certain rights. I notice this, for example, on public transport. I always use buses and trains because I can’t and am not allowed to drive a car. Then the question naturally arises as to who is more entitled to a seat. It took me a very long time to realise that I’m just as entitled to sit down as, for example, other people with disabilities. I’ve also often been given very angry looks by older gentlemen when I haven’t stood up to make way. But that’s exactly the point. I’ve got poor balance and can’t stand for long – it would be better for me to sit down. Yet I sometimes feel as though I’m not entitled to do so. You simply can’t tell by looking at me – despite my altered gait – and of course that’s also a privilege. Obviously, I’m ashamed that I can’t roll my right foot off the ground properly and that it makes a loud noise and so on – I’ve been made to feel a great deal of shame about that.

On the one hand, my disability has to remain invisible – invisibility allows you to escape the stigma – but on the other hand, in some situations it isn’t visible enough.

That’s also why I hate photographs of myself. Firstly, because of body-shaming – because I don’t fit the ideal of of a ‘healthy, slim body’. Of course, in my everyday life I don’t see my own body. So I don’t notice that my right arm is always slightly bent. But when I see this reflected in photos, it sometimes triggers insecurities in me. I recognise a certain unnaturalness in my posture, and that drains my mental resources needed to cope with my disability in a society that isn’t adapted to it. It takes up a great deal of mental energy and usually ends in repression.

• I repress the fact that disability is actually perceived as a deficit.
• I repress the fact that I’m somewhat overweight and am perceived as such.

I simply repress a great deal. At certain moments, it all comes flooding back, and I realise just how much mental energy it consumes. Then I’m also surprised, because I thought I’d got over it ages ago.

Thank you very much for your openness!