University can be daunting experience for anyone, but being a student with a chronic illness can bring its own unique challenges. Pippa Stacey was diagnosed with ME in her first year as a student at York University which forced her to adapt her way of living to help manage her condition. Since graduating in 2016, Pippa has become a prominent blogger, sharing her experiences and thoughts on life with chronic illness. Recently, she published her first book, University and Chronic Illness: A Survival Guide in which she provides everything you’d need to know going to University when you have a chronic illness. It covers everything from the application process and getting Disabled Students Allowance (DSA) to tips on studying and socialising. We sat down with Pippa to chat about the book and the importance of accessible, individual education and employment…
Hi Pippa, it’s so lovely to be chatting with you! Shall we start by telling me a little bit about yourself and the work that you do?
You’ve recently published a book called University and Chronic Illness: A Survival Guide. Can you tell us a bit about how that came about?
I’ve been ill since I was a teenager but I was diagnosed with ME during my first year of University so that was a big adjustment. My health had declined quite a lot at that time and I was trying to come to terms with everything and to keep on keeping on I suppose. I was really taken aback by how difficult it was to adapt to life as a disabled student. I was really surprised by the lack of support and the big gaps in stuff which would have been helpful to me. I found that the information I wanted at that time just couldn’t be found anywhere. When I graduated in the back of my mind I was thinking of writing about blog post about this but then when I started I realised that to do it properly there was so much more to go into it. There are some great blog posts on the topic but there was no comprehensive guide that took you right through the process from the beginning and went into depth in all the specific areas. I just wanted something that someone could pick up and everything would be in there. It’s basically the book I wish I’d had!
University is a daunting experience for everyone, but even more so when living with a chronic illness while there. What do you think the main challenges are for someone with a chronic illness at university?
The irony of having to do so many additional things that when you’re already trying to manage your energy and pace yourself when you’re actually having to deal with more than non-disabled students have to. The majority of chronically ill young people don’t ‘look disabled’. The social side of things can be difficult. Something I’ve struggled with is knowing when and how to tell people about your health. I imagine for someone going into freshers week that’s something which is particularly difficult. For the most part, I think it happens quite naturally. It’s difficult to say ‘this is exactly when you should do it’ because its so different for everybody.
If someone with a chronic illness was thinking about starting university, what do you think the key things they can do to prepare are (other than read your book!)
Something I wish I’d done and something I’d advise people to do now before starting is to sit down and think about your particular needs and the challenges you’re worried about facing. And then just make a list of every single thing you can think of that might help. Even if its something you think is silly, if its something you think will benefit you and help you symptoms, write it down and look into it. Even if you think its silly, unreasonable and unfeasible, don’t worry because you never know what support might be out there because thesea re all things you can talk to other people about. This could be a academic supervisor or the disability team. I think having a clear idea of your needs and how you can deal with them is a good place to start. Its easier said than done but never feel like you’re being burdensome or a pain because all of these things are just going to put you on a level playing field with everyone else. One of the things I wish I’d had the confidence to do is push harder for things if I didn’t get them. There’s things I look back at now which were reasonable adjustments which I was refused and I wish I’d fought back on because I had a right to them.
You’ve talked in your work about the importance of being your own advocate. This can be quite exhausting and difficult, do you have any tips for students who might be struggling with this ‘extra workload’ that comes with being ill?
It’s so sad to think about because people shouldn’t have to bear the responsibility of fighting for these things. If you can, pick your battles. Really think about what you’re putting your time and energy into. If there’s something you can let go of, then you can redirect that energy to the things that will be most beneficial to you personally. It’s a very individual and personal process.
Do you think that the current pandemic could potentially result in some positive changes for accessibility, which lots of universities have ignored for a long time?
It’s so funny how these things that we were told weren’t a possibility all of a sudden have been implemented on such a wide scale! It was impossible for us to have recorded lectures as a reasonable adjustment and yet now because of global circumstances it’s a given. The ease with which universities across the country have done it makes me think ‘what was the reason for not being able to do this before? It will be really interesting to see how things play out now. In the future, when and if things go back to normal, when someone asks for lectures to be recorded there’s no excuse for them saying no.
You’ve often vocalised that its important to acknowledge that university might not be for everyone, which I think is super important to remember! How do you feel about the common ‘overcoming illness’ narrative?
One of my fears when writing the book was the image of a ‘well meaning relative’ picking it up and giving it to someone who is severely ill and saying ‘this person with a chronic illness is going to uni so you can too!’ In reality we know its so much more complex than that. University in general isn’t for everybody, chronic illness or no chronic illness. Individual circumstances differ so much even within the same illness and uni just isn’t feasible in any capacity for some people and that’s something I want to ensure remains part of the conversation. The ‘overcoming illness’ ideas is so problematic in so many ways. Because of this idea of overcoming illness and the idea that recovery is the ultimate marker of success, I think that’s so damaging in so many ways. Success in my eyes is much more about the things you can achieve alongside your illness. You don’t have to overcome it to be a success story. I don’t think the media helps either. I understand it makes a good story of someone ‘valiantly fighting’. I don’t personally like ‘warrior’ language but I’m aware lots of people do and I’m very mindful of that. It’s all about individual preference.
I think the take home point from all of this – education, life, language – is you do what works for you, what helps you the most.
Accessibility issues can often vary between different universities and that can sometimes be difficult to navigate. You’ve recently set up a directory on your website for contacts for different universities. Could you tell us a bit more about that?
You’ve now finished university and are working in multiple roles! How have you found that transition over the last few years? Have many of the issues been the same when entering the world of work. Have you learnt any important tips or skills which may differ in employment to university?
While I was going through university I always had this worry in the back of my mind about what would come afterwards. I had a long way to go with coming to terms with my illness and reframing it. I didn’t think I’d ever be able to find work. The thing to make clear is I have been very lucky. I think luck has been very fortunate because it was a series of lucky events which landed me an internship after I finished uni. I worked for the disability charity Scope. I think having that first experience with a disability charity who were willing to understand and accommodate for my illness transformed everything because I could do the internship from home, I had flexible hours, I was working with other chronically ill people. There was a nice sense of teamwork where we all just helped each other out. Having that experience which then lead to a permanent role – I was with them for just over three years – showed me that it wasn’t just going to be a case of having to take whatever job I could find. I thought that because it would be so difficult, it would be about finding something I could do, as opposed to something I wanted to do. Over time as my experiences developed and my perceptions of working with a chronic illness have developed, I think the most important thing is knowing your work. Even if you have to work in a slightly different way, its about knowing you have something to offer. I think there definitely needs to be more flexible jobs for people with chronic illnesses and that’s something we’re working on through Astriid. It’s tricky because its so much easier said than done, but I’d like to say don’t compromise on your goals and go after what you want, but I know its not that simple. Keep your hopes high, though, I’d say. Be smart about how you use your energy and don’t be afraid to be ambitious.