How to Navigate University with a Chronic Illness

Natasha: Hello and welcome back to The Rest Room, the podcast about living well with chronic illness. I’m your host, Natasha Lipman. 

As autumn rolls around once again, millions of people across the UK are heading to (or back to!) university – whether that be in-person or remotely. 

It’s estimated that around 17% of higher education students in the UK now identify as disabled – and yet in 2019, the Independent reported that charities and unions were warning of a “concerning” trend – disabled students dropping out because of a lack of support. 

And because that is, indeed, concerning…but not really a surprise…today’s episode is all about how to navigate university whilst living with chronic illness. 

This episode is predominantly focussed on the more ‘traditional’ experience of going to university. But I would be happy to expand on this in the future if that’s something that would be of interest. 

Since I’m over a decade out of university at this point, I’ll be turning to my lovely friend, Pippa Stacey, who just happens to be the author of University and Chronic Illness: A Survival Guide. 

Pippa was halfway through her undergraduate degree in Psychology at the University of York, when her health dramatically declined and she was finally diagnosed with a chronic illness. 

 

Pippa: It’s a funny story, because what I didn’t fully realise at the time was that I’d been mildly ill with my chronic illness all through my teenage years, but I went to university having no real idea of what it was.

I knew that I sometimes didn’t feel well, but I didn’t have a diagnosis, so I didn’t identify as a disabled student in any way at that point. And it was only after I’d had a relatively typical first year of uni, I had a really amazing year, and it was the summer after that, where my health got to breaking point. 

It really declined from there, and it was from that point onwards that I started identifying as somebody with a chronic illness. It was wild, it’s so interesting to look back and see how my experiences as a non-disabled student compared with my experiences as a chronically ill student. 

You really have to change the way you think about things and the way you go about things. And the biggest contrast for me, I think, was my first year was pretty much care free. 

Obviously, you’re adapting to a lot of new situations. Whereas when I went back in my second year, you had to be so vigilant and so on it with every single element of your life. And I’m sure if there are any students with chronic illnesses listening to this, I’m sure that’s something that they’ll be able to relate to.

Natasha: Pippa was actually the first ever guest on my first ever iteration of this podcast many years ago! So I’m delighted to be able to bring her back to share her expertise. I actually learned a lot that would have helped me if I were to do my University experience all over again.

I’m also hearing from Dr Melanie Thorley – she’s the STAART manager from the student wellbeing service at the University of Greenwich and can speak from both sides – as someone living with a disability and someone who works with disabled students. She’s talking about the impact of the pandemic on the university experience for disabled people.

 

Melanie: I think a lot of our disabled students might have actually coped better with this situation than our non-disabled students, because they are used to having to adapt.

They have to adapt to a world and an environment and society where their bodies, wonky or not, are not taken into consideration. So actually, they are used to adjustments, they are used to having to be flexible. So possibly, because many of us have had a difficult educational journey already, this was just another barrier that needed sorting.

 

Natasha: As always, there is a corresponding blog post for this episode, including a transcript, which you can find linked in the description. 

If you enjoy and find this podcast helpful, please consider rating and leaving a review on your podcast hosting platform of choice and sharing on social media – or with anyone you know who may be studying at university right now!

Before we get into the meat of today’s episode, I want to quickly talk about the importance of taking some time to really reflect on your life, your health, your goals, your personality, and the type of experience you want from university. 

Whilst we’ll be sharing a lot of information, only you know what is best for your body, what you actually want to get out of university, and how best to live your life. Our aim is to help you find the support to help you do that.

It’s important to be as mindful of your needs as early as possible, so you can set things up in a way that will work best for you in the long-run. 

It can be super easy to go into something like university with an idealised version of the experience you want, only to push yourself too far. Being honest with yourself will set you up for a more manageable and sustainable experience. 

Universities are famously…not the most accessible places (although, where is?) and there are still so many challenges and things that need to change. Our hope with this episode is to help smooth that path for you as much as possible.  

Because this is coming out just before a new academic year, this episode is going to focus on five key areas. 

Accommodation, day to day living, studying, socialising and financial support. 

We’ll be talking more about covid-specific things later on in the episode. 

But for now, let’s begin with one of the most important places you need to know about: your university’s disability support service. 

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So who and what is the service for? Pippa says it can become a really important resource throughout your time at university.

 

Pippa: Every university should have a disability support service of some kind. Sometimes these are coupled with other services, like student health and wellbeing. Whichever University you’re looking at, on their website, there should be contact details for their office. 

And the role of the Disability Support officers is basically to work with individual students and help them navigate the challenges that might come alongside their studies. These things can be wide ranging, and I think the experience really does vary depending on the university you’re going to. 

But they are obviously a really good source of knowledge for things like accessing support you might be entitled to, disabled students allowance, which is a really big source of support for students navigating grants, and also a first point of contact with any issues that might arise during your studies as well. 

Oh, and one other really big thing they do, which happens quite early on, as you start as a disabled student is they come up with a support plan. 

Sometimes these have different names, but they basically sit down with you and they write a plan about how you’re going to make things work for you, what kind of adjustments you might need, anything that your lecturers or your tutors might need to know. And what comes of that is basically a document full of this information, which is passed on to you for your approval, and then circulated around the staff you work with throughout your time at uni as well.

 

Natasha: And what could a disability service support plan actually look like?

 

Pippa: For me, it was things mainly to do with the fact that I couldn’t always attend contact hours: so leniency with attendance was the big one for me. 

When my health declined, I really struggled to leave the house, which meant that I was missing lectures and tutorials, and I was working from home instead. And if that was a non disabled student, they would be penalised for missing lectures as much as I did. 

But because that was detailed in my support plan, and the tutors knew that I could work better and smarter from home, rather than using the energy in the exertion to get ready and go to the lectures, that was a big one for me. 

There might be things like the pathway for extended deadlines, or exam arrangements, so extra time for exams, something that a lot of chronically ill students find helpful is taking their exams in a smaller room, for example. So rather than sitting in a big area with hundreds and hundreds of people, you could either have a room on your own, or you could have a room with fewer people in it. So there’s less background noise and things going on. I suppose that was something that I found really helpful. 

And yeah, if you’re coming up from school, and you’ve had things in your education so far that you’ve been found helpful, a lot of the time, those things will translate to your degree as well. 

So I think my best advice for that would be to have a clear idea of what you think might be helpful as you go into that. And then when you approach your disability support officer, they will work with you to formulate that into a plan that works for all parties.

 

Natasha: Before arriving at university, something all students need to sort out is accommodation, whether that’s halls, some sort of house share, or, you can do what I did, and live at home! 

 

Pippa: Generally speaking, there are a few different options for first year and which one suits you is really gonna depend on your personal situation. 

So back then, I obviously wasn’t identifying as a disabled student, my health was pretty stable. So I opted to go for a single room in a shared flat, which meant that I had my own bedroom and my own ensuite bathroom. 

But I shared a kitchen and a social area with five other people – from what I can gauge from other people’s experiences that seems to be the default and the go to. 

Some of the pros of that is that it makes it easier to meet new people. Obviously, you’ve got people around you can socialise with, but one of the drawbacks can be that it can obviously get a little bit rowdy in times like freshers week and when people are going out – so noise threats can be a bit of an issue. 

Sharing a kitchen can sometimes be a little bit tricky with things like mess, and if you’ve got food allergies, but the alternative to that in first year that some people do choose to opt for is something called a studio flat. 

That’s basically where you have your own space, not just a bedroom and a bathroom, but you have your own kitchen as well. And a big plus of that, obviously, is that having your own space can make it easier to pace yourself and live within your means. But again, one of the drawbacks can be it can be a little bit more tricky to establish your social life and meet new people. So I think it’s worth really weighing up the pros and cons of that when you’re going into first year and thinking what’s going to be the best fit for you and your symptoms. I think there should be the option to speak to a disability advisor even if you’re in the application stages and you’re still deciding where you’re going and what outcome It might be right for you. If you have any questions, I wouldn’t be afraid of reaching out to the Disability Support officer or maybe even the accommodation team more generally, because I’m sure they will be keen to support you. Even though you’re still in that early stage.

 

Natasha: There are several other things that may be helpful to consider here, depending on your illness. 

For example: how far your halls are from your university buildings, and whether it’s accessible and within your energy limits to get to classes. 

It’s also worth thinking about whether you need a room on the ground floor, or an adapted bathroom. 

And then there are the smaller details, and things you can pack for. To give one example: lighting can be an issue for some people, so you will also have to think about whether you need to bring lamps to help you avoid harsh overhead lights in halls. 

And, of course it’s important to think about the social aspect. How comfortable you are around others, and how able you are to handle the noise from the people you’ll be living in halls with. We all know what freshers week can be like…but we’ll come back to that later on…

As Pippa mentioned, it’s important to speak to the halls of residence so they know what specifications you need, and it’s worth noting that some universities will offer halls to non-first year students who have a medical need for them.

But they’re not the only people worth talking to.

 

Pippa: If you can, because social media can be such a blessing for things like this, I think it’s really worth looking for other disabled students at the University you’re interested in. 

More often than not, they will be more than happy to share their experiences with you, and hearing from people’s personal experiences rather than just going by what the leaflet or the flyer or the website might say that can be a really valuable resource as well.

 

Natasha: So, you have somewhere to live and you have your plan all sorted. What next? 

Well, for many of you, it’s likely that this will be the first time you’ve lived away from home. Or university may just be a completely different way of living to what you’re used to. 

So let’s have a chat about what we think you need to look out for when it comes to day-to-day living…

 

Pippa: that is often one of the first times when someone is living independently by themselves. And I think when you couple that with the fact that more often than not, you’re surrounded by non-disabled students who, generally speaking are having quite a – I don’t like the word typical or normal, but they might be having a more general experience of university, the one that people kind of associate with being a student – that can almost feel like a high pressure situation, it can sometimes make you feel isolated, feel like you’re the only one who’s experiencing what you’re going through at that point in time. 

I think for me, one of the biggest things was learning how to manage my energy. And whilst some people might assume that that just applies to the studying part and the academic part of university, one of the biggest challenges I think, was just adapting to all the other elements of being a student as well. 

So things like independent living, socialising, and keeping on top of things, just learning how to allocate your energy in all those different parts, as well as trying not to let that compromise your studies. It wa quite a balancing act, to say the least.

 

Natasha: This is where a lot of the tools that I have talked about on past episodes of this podcast, as well as on my blog and social media may come in handy. 

I don’t want to become a broken record with pacing, but it’s really important that you take the time to think about how new additional daily living tasks are going to fit into your energy spend. 

This includes things like preparing food for yourself and cleaning. There are a lot of great resources out there, for example: disabledmeals on Instagram is a goldmine. You may also find that there is adaptive equipment that can help too. EquipmeOT is a good Instagram page for that!  

When it comes to your medical and personal care, being proactive and knowing your options will also make your life easier. 

Check in with your university doctor’s surgery or nearby GP, so that you’re registered and ready for whenever you need them, rather than waiting until you’re especially poorly. 

It can be daunting moving your medical care, but it can be helpful to make a plan in advance. Speak to any of your current medical providers to discuss managing your care whilst at university. Many people find it helpful to physically write down what your new doctors need to know about your conditions, treatments and medications. 

You can also get in touch with your university to see what other support is offered, like psychological services. 

For many people, University can be a stressful experience, and we all know the impact that stress can have on our bodies. 

Personally, I find it can lead to a significant increase in my pain, which means that finding ways to calm down and relax can be incredibly important. And one of the most important things I have to do every single day is self-massage.

With that in mind, I’d like to talk to you a little bit about today’s sponsor: the Alexandra Kay range from Green People.

Alexandra Kay was diagnosed with EDS in her mid-twenties after more than 12 years of struggling with chronic pain, amongst many other symptoms. She sadly passed away in June of this year from severe digestive complications.

Before she died she was working on a range of wellbeing products with her mother, Green People’s founder, Charlotte Vohtz.

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Time to Ease – is blended with the same base, but includes 9 essential oils, giving you a more fragrant experience!

I’ve been using Time to Soothe for my much needed myofascial release, and adds much-needed slip, whilst not being greasy and leaving the skin feeling soft and hydrated afterwards.

Alexandra’s 29th birthday would have been 2nd September – so, with this in mind, Green People have dedicated September to raise as much money for EDS as possible, with 10% of net profits from this month going to Ehlers Danlos Support UK (with the aim of raising £10,000).

You can check out the full range under the wellbeing tab at greenpeople.co.uk and on social media @greenpeopleuk. 

And now onto what you’re technically at university to do: study. More specifically getting support to help you make the most of your academic life.

 

Pippa: I just think forward planning is so important. I think it’s a really difficult balance. Sometimes you have to be able to plan in advance and figure out what you’re going to do. But you also have to be able to cut yourself some slack. 

So whether you’re studying full time or part time, and I was studying full time throughout my undergraduate degree, you just have to be on it, I suppose. 

You have to look at your course material and figure out how you’re going to break that down in a way that works for you. This is a bit of a controversial piece of advice, but I would say sometimes if your health is really suffering, you have to learn how to prioritise the course content that’s going to be most beneficial, and it’s going to have the most productive outcomes for you. 

What you’ll find at university is that you get allocated masses and masses of extra reading and the work could go on for as long as you want it to. You could never read absolutely everything on your subject, it would be impossible. So I think you do have to make smart decisions sometimes about what’s going to be best for you. And yeah, find the things that find how work fits into your day. 

I know that ties into something that you’re very knowledgeable about, pacing, and how to fit that into your day. Figure out a way that’s going to work best for you, but also, go easy on yourself. There’s a lot of toxic information out there at the moment about productivity and doing wild hours per day. But I think personally, it’s much more effective to tackle things a little bit at a time rather than just trying to bulldoze through all making yourself ill as a result, because nobody wants that.

 

Natasha: As we mentioned earlier, it’s really important to make yourself aware of the support services your university offers, and to work with them on developing a support plan. 

In many cases, we, as individuals, don’t know what kind of support or reasonable adjustments are actually available, so they’re a great font of knowledge, and may be able to suggest things that you didn’t even know existed!

 

Pippa: In the context of study, a reasonable adjustment is something that in simple terms help you on your academic journey. So it might be things like having a note taker in your lectures to help you write things down, it might be a support worker, or a PA who can help you manage the independent side of university, something that a lot of people don’t know that they might be entitled to. 

And something that really, really helped me was just having taxis funded to take me to and from my lecture, so that I didn’t have to do the 20 minute walk or get to buses. It’s stuff like that, that can really help you save the energy. And if you’re arriving to a lecture and you’re completely running on empty from just having to get there like, you know, you’re going to be no use in that lecture. So stuff like that really can make such a difference.

 

Natasha: You might have heard a little gasp when Pippa mentioned the taxis there, because I used to commute from the suburbs into central London most days for university, sometimes getting a cab from the tube station when I needed it, or my parents would have to drive me in. So cabs would have been an absolute bloody game-changer for me! 

So what are other reasonable adjustments? Here are just a few to get you started: 

It’s worth speaking to lecturers about what’s feasible with regards to contact hours, so things like when you’ll attend and whether you can do some classes remotely. 

With the pandemic, all lectures were held remotely, so you’d hope universities would be well placed for such an offering come the autumn term, although I know this isn’t the case everywhere. More on this in a bit.

Universities can also offer things like support workers, such as study assistants, readers, scribes, and sign language interpreters throughout the year. They can also make changes to trips and placements, as well as to buildings, labs, and accommodation.

It’s also important to look into exam arrangements and what conditions you need to perform well – speak with your lecturers and disability support services to see what can be offered to best help you succeed. 

This may include things like taking your exams in a quieter room, having rest breaks, using a laptop instead of handwriting, or having a scribe. 

I went to an American university, so I know this is slightly different, but in a couple of classes, I was able to sub out an exam for an extra essay. You can also find out information about coursework extensions if necessary. 

Speaking of American universities, the system is different when it comes to classes and grading. By that I mean, I would take multiple classes a term, which were continually assessed, and then my grades would be effectively banked. Which meant that if I needed to take a term off, everything I’d done up to that point would be saved and ready until I was able to come back. 

Luckily, I didn’t need to use that, but I know several people at UK universities who have been stung by time out and leave of absence policies. So this is something I’d highly recommend speaking to support services about so you can understand how this will work at your university. 

For many people, socialising is a really big part of the university experience. But as with literally everything in life, we are all different. Only you know how your personal mental, physical and social battery runs. It’s likely you’ll learn a lot about that during your time at university. 

 

Pippa: I think it’s one of those things that gets better with experience. You’re not going to get it right exactly the first time. And I think as you go along and spend more time at university and around these new people, you will start to figure out what makes you happy and what you’re doing because you want to spend your energy on it rather than what you think you should be spending your energy on. 

So there will be chronically ill students who do like the going out, and if they’re well enough to do it, then good on then they might like going out and drinking and all stuff like that. There might be people who really don’t want to be a part of that culture, and really can’t think of anything worse. 

And then there might be people who fall somewhere in the middle as well. 

And despite what we’ve been told about what typical student experiences are like, I think it’s really important that people know that any of that is okay. And even though you might think that everybody around you is going to be all about the drinking and the going out, and believe me, it might seem that way in the first few weeks, because I think everybody during freshers week in the first few weeks afterwards tries to give off that impression of themselves, or they did back in my day anyway, because that’s what we’ve been told is going to make us popular, and so we should make friends. 

And I really hope that is starting to shift now. And that people realise that there are other ways of socialising and meeting really brilliant people and having a really good time that don’t involve these things. 

I do think we’re starting to see that shift in universities as well and what they offer. 

So many universities now offer an alternate freshers week. So rather than having the club nights, they have things like movie and popcorn nights, games, nights, really lovely stuff like that. And the other thing that I learned in my experience as well is that if you are on a night out, and you kind of get to that point in the night, and you think, oh I’ve had enough now I want to go home, and you kind of feel as though you can’t, because you don’t want to be the first one to say it, I guarantee that if you’re the one who says it and you’re the one who initiates going home and picking up a pizza and getting your pyjamas on, you will be somebody else’s hero, you really will be because there will be people who are secretly sitting and thinking the same thing as you are. 

So I think like, I mean, I could talk about this forever. But I think in summary, it’s about thinking about what you personally want to spend your energy on and what will make you happy and not being afraid to go with that.

 

Natasha: Something else to add to your list of things to think about is whether you want people to know about your condition or not – some people are very open about it and others prefer to keep it more private. 

If that’s you, please know that you can speak to support services about keeping it undisclosed. Although safety is key, if there are things that the people in your accommodation or lecturers need to know about to help you, then it’s wise to do so.

When it comes to socialising, especially in the early days of university, you may come face to face with the twin issues of FOMO (fear of missing out) and what I have elegantly coined AMO, actually missing out. It can be really tough wanting to do things that everyone else is doing but your body just…says no. 

Pippa says these are things she really struggled with…

 

Pippa: I keep saying this in this podcast. But really, I think cutting yourself some slack is such a huge thing. 

Because a lot of the time we’re made to feel as though we’re not allowed to be upset if we’re missing out. But it is rough. Like if you’re sat at home in your university bedroom, and you’re feeling absolutely rotten, and you know that all of your friends are out having a good time and you haven’t been well enough to join them. That can be a really difficult thing. So please don’t feel as though you’re not allowed to be upset about that because you absolutely are. 

In terms of things that helped me, I’m just trying to think back, social media, even though it can be awesome for so many things I’ve found could be what I call the FOMO facilitator, in terms of social life. So I would say don’t be afraid to use the mute button whenever you need it, whether that’s just for the duration of an event that you didn’t make it out to or more generally, there were even times where I muted my friends, my best friends and the people I will live in with because I just had days where I couldn’t deal with seeing all the things that I was missing out on. 

And I say that even in the knowledge that I think something we’re all beginning to realise that is that social media is a highlights reel. So even if you are so at home and seeing what looks like all of the people having all of the amazing experiences, take it with a pinch of salt and remember that it is the highlights as well. 

But in terms of more practical advice, I think wherever possible, it’s good to give yourself something nice to look forward to. So even if you know you’re going to be missing out on big events that you might have liked to be a part of, think about what you can do on your own that can make the experience of being by yourself a little bit nicer. 

It could just be something really simple like having a bar of your favourite chocolate to look forward to having an episode of your favourite TV show. And yeah, don’t be afraid to just indulge and just make the best of things. 

And then, in terms of combating that over the longer term, I think once you start to establish a relationship with your friends and your flatmates, there are ways of having conversations about it that can be effective. 

So even if you’re not well enough to join in with everything, it might be that you can just sit your friends down and maybe have a chat about things that you can do that would make you feel included. Because often these people might not even realise that you might be feeling a little bit left out. 

So perhaps think about some more inclusive activities that you and your friends could take part in and just float those ideas as well because like we were saying about the socialising, not every part of the university experience is about drinking and going out culture. 

And personally some of my favourite experiences from university weren’t the night, it was going for brunch with my friends, and then just coming back, and then we’d all get into my bed afterwards. And we just chat absolute rubbish for hours and hours. And those are the experiences I look back on most fondly. So don’t be afraid to be the one who initiates those things as well.

 

Natasha: There’s also something I’d like to add to this. When I was at university I was brand newly diagnosed. I knew absolutely nothing about how to manage my health (in fact, it took me years and years to learn about that), and so looking back I sometimes regret how much I did during that time, wondering if I should have paced more. 

But, firstly, I was able to do more then than now, secondly, I didn’t know what I know now, and thirdly…it’s still ok to make decisions to choose to do fun things. 

In this episode we’ve talked a lot about things to think about, and I generally talk a lot about pacing and self-management because for a lot of conditions, that’s the best (and sometimes only) option available to us right now. But that can also become restrictive. 

The key, as my lovely Occupational Therapist said to me, is that making a conscious decision to do something is what counts. 

This is why thinking about the wider context of everything that we’re doing can be helpful, because we can build in some of those more challenging things that we may want to, but struggle to do. 

It’s ok to choose to do something knowing that you may not feel great afterwards. That’s also part of being a student…and also a person. Just make sure, where you can, to plan for it.

The final topic we wanted to touch on is financing. 

You may be eligible for Disabled Students Allowance – which is there to help with “any extra essential costs you may have as a result of your disability.”

It’s not always clear what’s available to you but it’s well worth applying because it may help provide you with equipment or additional support. 

This can cover stuff like:

Specialist equipment – for example if you need a computer and specialist software,

A non-medical helper – for example, if you need a BSL interpreter to attend lectures. 

The travel thing I gasped at – for example, if you need to use a taxi to attend University, rather than using public transport

They say that a range of general costs may also be considered, related to your disability. 

There are also bursaries and scholarships available for disabled students. 

For example, The Snowdon Trust provides grants to students with physical and sensory disabilities studying in the UK in further or higher education, or those training towards employment.

The grants help cover additional costs students incur as a result of their disability which statutory funding doesn’t cover. Costs include support such as BSL interpreters, people to take notes, computers, specialist software, wheelchairs or special accommodation and equipment.

About 100 grants are awarded a year, ranging from £250 to £3,000.

So, we’ve had a nice little natter about university and chronic illness, but we can’t ignore the fact that this year, like last, is not going to look like it did when both Pippa and I were at university. 

Pippa says while no one would have wished the pandemic on anyone, there could be some positive outcomes for students with disabilities and chronic illnesses but there’s still a long way to go…

 

Pippa: It’s had a really interesting impact on the way we think about things like not just education, but employment and socialising, and all different elements of life like that as well. 

I think for the longest time, people with chronic illnesses have had to try and make themselves fit within systems that just weren’t designed for them, so models of education that evolved, going out of the house and going to a physical place of study and studying in a very set way. 

Whereas when all of that is dialled down, and dialled back, what I hope has been shown over this time is that education doesn’t have to take place in that really rigorous way to be useful, and to serve its purpose. 

All of these different elements of life and all of the ways in which people with chronic illnesses feel like they have to spend their energy in order to interact with the world. Suddenly, loads of those barriers were lifted. And I’ve been completely the same, I haven’t had FOMO to anywhere near the same extent as I was having it before. 

Interestingly, for me, I’ve actually found this last bit of the pandemic, the bit where restrictions are easing, I found this but the hardest bit of all, and I know it’s been a bit of a strange one for students who are either in university or starting the university as well trying to navigate the unique challenges that are going to come with this point in time where not only do we have a pandemic, but we’re also navigating who’s going to feel comfortable doing what and how you negotiate that with the people around you as well. 

So it’s a really interesting time at the minute especially for higher education.

Something that I did experience, and this was obviously prior to the pandemic when I was at university: The idea of studying from home was Very much to be given the fact that my offer was at a physical University, the expectation was that I would attend lectures in contact hours. 

And back then when my health really did start getting problematic, and I needed to stay home, and I wasn’t well enough to leave the house, and a not so positive experience I had at university was approaching Disability Services and asking for my lectures could be recorded the same way they were for other departments, which would mean that I could watch them from home and study from home. 

And at the time, they said, no, that wasn’t possible because of the rooms that my lectures were in. And that was the end of that. And when I did try and push that what they came back with was, well, if you’re struggling to attend contact hours, should you even be at University at the minute, maybe you should be taking a leave of absence instead. 

And the fact that that came from Disability Services I did feel was quite ignorant of the fact that even though Yes, I wasn’t well enough to be leaving the house and physically attending, it didn’t follow by default that I wasn’t well enough to be studying. 

And I would, given the global situation we’ve had now I would dare any university to say that again. 

Because back then studying from home and making lectures available remotely was seen as such an impossible thing. And yet, suddenly, when the pandemic happened, it magically became possible overnight. 

And without doing too much of a deep dive into that, I just think it’s really interesting that that suddenly became available when non disabled students needed it too. But I also know, full well that, again, as restrictions are easing, I know that a lot of universities who did offer online study are now starting to revert back to the traditional model. And while I hope that lessons will have been learned from this time, I’ve already heard from students who have been told that online learning won’t be possible this year, and that if they want to study they will have to physically attend in person. And I think that says it all. 

Really, I think we’ve still got a very long way to go in figuring out how we can make higher education more inclusive for people with chronic illnesses in particular,

 

Natasha: Melanie says disabled students have had mixed experiences of the pandemic. On the one hand, many struggled with isolation, technology and not having the in-person support networks they relied on. However, she agrees that for chronically ill students in particular, many things have been put in place that have made the world of difference.

 

Melanie: There were quite a few benefits for disabled students, chronic illness in particular: no commuting, commuting for a lot of us, I was a disabled student myself. So I’m talking from experience, not just from the students that I work with. 

Commuting, either having to drive somewhere, taxi, bus, train, or whatever it is, can be exhausting. It can also be quite distressing. For some people, it can also raise anxiety for a lot of people staying at home, or getting up half an hour before you need to as opposed to two and a half, three hours to get ready. Also, which is a strange thing. For a lot of people wearing things like pyjamas and lounge suits. It’s not just a comfort thing. There’s no belt, there’s no buttons, there’s no zips. There is an expectation that when you go to university, you are dressed. But we all know and I’m sure we’ve all done it at some stage that we have taken part in webinars and such in our pyjamas or in our tracksuits. In fact, both myself and my husband actually bought ourselves some work pyjamas, which were smart ones for meetings, things which as simple as this were really easy. 

Also staff got into the habit of recording their sessions. And again, chronic illness, or if you have something that fluctuates, chronic fatigue, multiple sclerosis, fibromyalgia, that sort of thing. It does peak and trough. And sometimes you just think, No, not today. But if you know that that session has been recorded, it’s actually peace of mind. 

Because what happened before we’ve had it with students who’ve had to go to our hospital, they’ve had hospital stays. While they’re there. They are worrying about what they’re missing. Especially if there’s exams coming up, projects do group work, and they can get themselves in quite a bad situation from anxiety and worry, because they’re missing it this way. It is all there. So there are advantages and there are disadvantages to the situation.

 

Natasha:  The UK government has said that since the easing of the rules in July, there will be no restrictions on the approach to teaching and learning and we can hope lessons learned from the pandemic will now be applicable. 

 

Melanie: Different universities are taking different approaches. Some universities are saying “Everybody in, back to how it used to be”, which as we know, doesn’t particularly work for most of us. 

On the other side, there are universities, which are basically saying, no, it’s all online until at least January, when we will revise. 

And then you’ve got the middle ground. So our university, we are going to continue with a hybrid approach. Obviously, we’ve got different disciplines. So it will be different, depending on what course you’re doing,

 

Natasha: And what can you do if you don’t feel safe going back into university?

 

Melanie: It does depend on the universities. The majority of them, including us, if a student feels safer at home, we will do our absolute best to accommodate that there won’t be any penalties for a student who’s putting their health first. 

Because we all know if you’re not healthy, or if you’re hungry, or you’re homeless, anything, you can’t learn anyway. So it would be pointless of the university insisting that people came in, because what will happen is students will either fail, or they will leave. So actually, by the university having a hard stance, you have to come in, they will lose students for it. 

If a student is in that situation, it is definitely worth contacting their disability team, or they’ve got different names for different teams in universities, and contact them and your personal tutor with your concerns and say, I want to stay at university, however, because of whatever I don’t feel safe. Can I continue doing this? 

My hope is that universities will say yes, thank you for telling us, because obviously, a lot of students think that staff members are all psychic and know what’s going on. 

But if you let the university know, there isn’t really…the only time there might be difficulties is with things like education, nursing, paramedic, where there is specific attendance requirements. But universities really should have thought about what they’re doing with that.

 

Natasha: As the episode comes to a close, there’s a couple more pieces of wisdom I want you to hear – the first comes from Pippa and it’s a bit of advice she’d give to her past self, that you may benefit from too…

 

Pippa: The one thing I would do differently, and the one piece of advice I’d give to everybody, is to not be afraid to fight for what you need. 

Back when I was going through it, I often, because I was quite new to disability and chronic illness and I didn’t really have an idea of my rights, I did very much feel like a burden for needing reasonable adjustments. 

I felt like any adjustments that were made was something that was like a favour, almost even though I knew I know how ridiculous that sounds now. And I think that had I been more aware of what my rights were and what I was entitled to, I wouldn’t have given up fighting for the support, which could have really made a difference to my studies. 

So anybody who’s going into university, or perhaps they’re now I just say, don’t be afraid to really push for what you think you need. You’re not being problematic. 

You’re not being a burden, or anything your mind might be telling you if you’re anything like me. And if it’s something that can really make a difference to you personally, I think it’s worth fighting for.

 

Natasha: I also asked Melanie the same question. Here’s what she said.

 

Melanie: Going to university, and succeeding at university, is probably one of the best things that you will do in your life. 

So I am 54 and a half now, and going to university is the second best thing I’ve done in all of those years. 

It has not been easy. I nearly had to leave my first my undergraduate degree when my depression got absolutely flattened. And when I did my doctorate, I had to interrupt for two years, because I was put onto morphine patches. And we all know what that does to you. 

But I stuck it out and I did it. And the opportunities that I’ve had would not have happened without my university education. The best thing to do is to find a way of learning that suits you. 

Talk to your friends, talk to your family, have networks of people that understand you, do not bother with toxic people. That’s like our number three in our list of things to do anyway, avoid toxic people because they’re not worth the energy. 

It might be difficult to start at the beginning of time, but hopefully it will get easier. This is hopefully a temporary situation. The rollout of the vaccines, people knowing more about it, it is going to be much safer to go back to university. 

Go to university if you can, but don’t beat yourself up. If you think that you will be better off staying at home.

 

Natasha:  Thank you so much to Pippa and Melanie for taking the time to speak with us. I hope this episode will be of help to anyone heading to university, who’s considering it, or is there already and is a bit overwhelmed with the thought of continuing their studies.

Remember – if your university doesn’t know you have a chronic illness, it can’t support you with it. And as Pippa says, you don’t have to ‘defy’ or ‘overcome’ your condition in order to be successful.

There are lots of people living with chronic illness who have graduated or are currently at university who are sharing their experiences online. I’ll be making a post on my Instagram feed @natashalipman – so please feel free to come and join in a conversation there! 

There’s also a cheeky giveaway included in the post – so make sure to check it out! 

Thank you for taking the time to listen, and to Green People for sponsoring this episode. Thank you to my bloody brilliant producers James and Ollie, and to Mimi Butlin for the episode art. 

To listen again, or for future episodes, you can find us wherever you get your podcasts. Ta ta for now!