Studying with a chronic illness isn’t easy. Student and Welfare Officer at Durham University, Lorna Reeve, shares her advice for coping with higher education when you have M.E.
I have had chronic illnesses forever, but really flared up the summer before I started my GCSEs. I had bursitis, carpal and cubital tunnel syndrome, hypermobility spectrum condition and M.E. At the time, the problem was mostly pain, and I got through my exams with a few adjustments such as typing, extra time, rest breaks and moving.
It was during my A-level exams, however, that I was worst affected. I couldn’t attend college for a few weeks and spent most of the time asleep or minimally conscious, hardly able to focus on a TV programme. By the time the actual exams came around, I could still barely stay awake for an hour, and really struggled.
Luckily, I had the right support in place. I sat my exams in a room with just me and an invigilator, and this made a world of difference. I could switch the lights up or down, have the window open or shut, move around how I wished and sit my exams from a supportive chair, the floor or by scribe. Many of my exams ended up lasting four hours (instead of the two my friends had) because I took breaks, had extra time and kept falling asleep. I submitted mitigating circumstances forms, but it turned out I didn’t need them - I still got one A* and two A grades! It was extremely unexpected.
I am currently entering my third year at university, and since starting my degree, I have found myself struggling with similar issues. I’ve submitted what we call Serious Adverse Circumstances forms, which may mean some leeway on my final degree classification. Aside from that, I have had support in place that has helped mitigate things most of the time.
I’d like to share with you what I’ve learned from my experience in education so far, so here are my top tips.
1. Get talking
Firstly, communicate! With family, friends, lecturers or teachers it’s important that they know what’s going on and how you’re doing. Remember, it’s always easier to mitigate for a flare-up before it starts, rather than in the middle of one. Communicating with friends about your condition can be difficult at first, but it can really help, and in my experience, they are often very happy to do what they can. My friends have been a lifeline to me, for things as simple as filling a hot water bottle so I don’t have to get up (or spill hot water all over my hands). They are also aware that I sometimes faint and have been primed on what to do should this happen.
2. Get support
Contact disability support at your university and arrange a meeting (you can take a representative if you need or would like to). You will be assigned a disability advisor who will discuss things with you, and what kind of support, financial or otherwise, you may be entitled to. It will all be written down in a disability note (or equivalent) which is shared with your department. There are other support organisations that may help too. Social services in your university town may be able to help with things not covered by disability support, such as personal assistants or grab rails. Also, look for disability groups at your university. At Durham, for example, we have the Students with Disabilities Association, where I am Welfare Officer.
3. Get organised
When it comes to managing my general study time, and preparing for exams, organisation is absolutely key. A lot of my friends find it odd how organised my computer is, but it helps a lot when I can easily find what I need. I have folders for each year of education, each subject or module, and then each topic. In addition, in the Summer before each academic year starts, I email all my lecturers to make them aware that I’m disabled, a wheelchair user and in their class, and to let them know I would be able to work much better if I had access to the reading lists and other key information sooner. Some universities publish their reading lists early, but others can take longer; in any case, asking shows that you are proactive and committed, as well as notifying them that you exist!
4. Get tooled up
Make use of any available tools and software that can help you manage your studies – if you struggle to concentrate in lectures, for example, then voice recording software or dictaphones can be great, as you can record the lecture and listen back later. As I struggle to handwrite, I also voice record all my revision notes, so when I’m flaring I can just replay them (this was how I got through my exams this year!). A lot of my notes are on my laptop, which can be helpful as I can use screen reading software if I forget to record anything. When revising, you may find you need to take breaks more regularly than your friends – I personally like to use the Pomodoro timing technique to help me manage this. One of my favourite pieces of software is Dragon Naturally Speaking which is a speech-to-text software that I use for a lot of my essays: instead of typing I just talk and it writes for me.
5. Get social (but don’t overdo it)
The social aspect of university can be a challenge too when you have a chronic illness. Remember, it is completely up to you as to how, and how much, you want to engage. Personally, I don’t drink and don’t often go out, but I have found that revising with my close friend is a great way to stay social. The main thing is remembering to pace yourself, and to learn that it is OK to say no – there are many people who choose not to go out or not to drink, and whatever your preference in this regard, you’ll likely find similar people to you. I still go to some socials, but on my terms, and most of my societies and groups are great at understanding and amending plans so I can attend. A lot of my favourite social times are with one or a small group of friends/hall mates watching a film, playing games or just chatting. It’s great if we stay in, because then I can head to bed when I need to and I’m close if I crash or faint.
With careful planning and the right support in place, you can still achieve your goals, even if you need to take things a bit slower and differently than some others. The biggest thing for me is communicating, building confidence and finding people who understand what it feels like. To this end, if you’d like to chat to me about anything feel free to email me.
More studying tips from our supporters
Practice makes perfect “My biggest tip is to practice the skill of studying with M.E., before signing up to your ‘dream’ course. Know your limits and plan your studies to be well below those limits, to allow for fluctuations. Be upfront with the provider about your M.E.-related limitations. I practiced the skill of planning my studies into my day (little and often works better than all in one go, once a week) by finishing off a level 3 course I was already doing when I got M.E.” – Jenni Griffin
Pace yourself “Do what is manageable without over pushing yourself. In order to do this, take regular rests as often as you need – and these should be a total break from all stimulation. Prioritise what you need to do. Lectures are important, so prioritise those. That being said, try to not miss out on all social activities. Try to go to something, even if you have to leave early. It will help your mood if you are able to spend time with other people.” – Caroline Harvey
Exercise your rights “Make sure your educational institution applies for all exam concessions - rest breaks, 25% extra time, and alternative site so you can take the exams at home. They may not know these are available if you have M.E., but it is included under the Equality Act as a disability. So you may have to ask for them, not wait to be offered.” – Claire Tripp
Mature students It’s not just young people with M.E. who might be studying for a degree. “I’m doing a distance-learning MSc with severe M.E. and I’m 38,” says Jenni Griffin. See what our columnist Patsy Quinn has to say about taking up studies as a mature student on p 50.
Disability Rights UK has a range of free guides and factsheets for students with basic information about benefits, tax credits, social care and other disability related issues for claimants and advisers. Tel (Disabled Students Helpline) 0330 995 0414.
Snowdon Trust helps people living with a wide range of disabilities to achieve their goals in further or higher education or vocational training, by means of grants and/or scholarships. Tel 01403 732 899.
Leonard Cheshire offers care and support services to help individuals to live, learn and work as independently as they choose, whatever their ability. Tel 0300 303 0074.
The NUS Disabled Students campaign exists to represent, and extend and defend the rights of disabled students.