Published in InterAction 39, Spring 2002
Long days in the library, late night chats, dancing til dawn followed by dodgy kebabs and two hours sleep before 9am lectures... This might be the typical student lifestyle, but as a recovering M.E. sufferer, I wouldn’t recommend that particular approach to student life.
In fact, I would advise even the healthiest of students not to go too overboard, as these are the ones who end up exhausted, laden with infections and therefore prone to M.E. But I would utterly recommend further education at the right time to those well enough to stay the course. Studying something you passionately adore is excellent ‘physiotherapy for the mind’, as Helen Clifford put it in her InterAction 30 feature on adult education. Being a student can improve your life, broaden the mind and enhance career aspirations.
Full or part-time?
Before launching into a full-blown university course, it is advisable to enrol in a short course at your local adult education centre. This can help by gently introducing you to studying, and to homework. In my years off uni, I did a ‘one evening a week’ photography course at my local Adult Education centre.
Full time education is demanding and part time may be advisable if you have taken a long break from education. I wish I d considered this, given that I had a relapse after my first full year at university. Not all universities will require A levels, especially if you are entering as a mature student, but they are another introduction to studying. Further education colleges will waive or reduce fees for most part-time courses if you re on income support.
Choose a course that motivates you
Find a subject you absolutely adore. Having to study when your body is telling you to rest and your brain is totally fogged is hard enough without being bored too.
Talk to the course convenor about the subject as courses do vary considerably between institutions. Look beyond the first year, and consider module choices carefully. When I got to my second year at Oxford I realised that I had to take certain modules, leaving me with just one out of five that I actually enjoyed. Now I’m at Nottingham, I have tailored my degree with a choice from 40 modules, all of which I enjoy 100%.
Look very closely at the workload too, which can differ widely between institutions. For instance, a science course at Oxford meant 26 hours of teaching a week, compared to 15-18 hours at Nottingham, and arts subjects generally mean fewer lecture hours than science ones. Visit every potential university before accepting a place.
Investigate practical issues:
- Find the student disability or special needs officer when you go. They will help you answer many practical questions specific to that university.
- Often each Hall has its own Welfare Officers (male and female) who are a total lifeline. The Students Union will have its own officer who is generally a student on a sabbatical year. Amazingly, mine turned out to be a wonderful girl with M.E. who took the year off to help others cope.
- Is there a university support group, or a local M.E. support group in the area? AfME can give details of the latter.
- Is the university campus based, or will you be spread out all over town? Campuses are an excellent idea, as they have everything from bank machines to supermarkets and bars within an enclosed area.
- Is the place wheelchair-friendly and does it have decent local transport? At Nottingham my lifeline is Clive, the disabled minibus driver, who picks me up from anywhere on campus within 10 minutes and takes me where I need to go it doesn’t matter that I don t use a wheelchair. Student Unions may also have late night minibuses, taking people from campus to student housing areas, which is handy at night.
- Is there a Medical Centre on the campus and if so, are they sympathetic to M.E.? It’s a good idea to take a letter from your home GP/specialist explaining how your M.E. affects you and to change doctors if your first college GP is unhelpful (I did!). Something I found invaluable was my Halls’ proximity to the doctor’s surgery and chemist.
- Can you keep a car there? This is a huge help for the supermarket, but beware of sponging friends who try and get lifts all the time. Most institutions will allow people parking permits with written permission from their college doctor. Of course if you have a disabled parking permit (orange badge), parking is easier.
- How far away will you be from home? Many people yearn to get as far away from their parents as possible, but this makes it harder to get home for weekend rests.
Accommodation: Thumbs up for Halls!
Living options include Halls, university owned flats, student houses or commuting from home. In Halls you can get three meals a day so you don’t waste energy on shopping and cooking; also most are centrally located. Find one near to your department, and preferably with a car park if you’ll take a car. Make sure it’s not at the top or bottom of a hill!
Halls tend to be pretty good about special dietary requirements such as wheat, dairy or gluten free meals but always check such factors with the individual hall before accepting a place. Halls do tend to be noisy, but for women, all female corridors are often quieter. Request a room on the ground floor to save your legs and if possible, an ensuite bathroom so there s not so far to stumble in the night for the loo.
Living out can be quieter, but means further to travel each day, and you have to do your own cooking. Whatever you choose, always personally check out proposed accommodation before accepting it.
Getting extra financial help
You must apply to your Local Education Authority for your fees to be paid, although students now have to make a contribution of up to £1050, according to means.
Your LEA can also award you a Disabled Student Allowance (DSA), which you apply for with a supporting letter from your doctor; disability officers can help here too. Your LEA may grant funds for some or all of the following:
- computer, printer, scanner, internet connection, voice recognition software which types for you
- tape dictaphone to record lectures
- comfortable adjustable desk chair, foot rest, and copy holder
- photocopying and book allowance to minimise time spent in library
Your DSA assessment can be lengthy so tell the assessor if you need a break in the middle. Be armed with an extensive list of everything you want, and don t be afraid to ask for it.
Welfare benefits like Disability Living Allowance are not means tested and could make a big difference more information is available from the Benefits Agency or AfME benefits advice lines.
Coping with the work
The crunch time has come, but how will you survive? Pacing, rests and not overstretching yourself will help enormously. Make yourself known to your lecturers, explaining your situation, and they should be happy to go over anything you miss. Go straight to the lecturer if you need an extension, otherwise you’ll lose marks for handing work in late. Try to attend as many lectures as possible, but be realistic. Befriend patient people with neat handwriting who will lend you lecture notes to photocopy. You will be allocated a tutor from your department who is your first port of call for any work-related problems. Never hide these or they’ll just grow, causing unnecessary stress.
Exams: special considerations
Go and see the Disability Officer early on to re-establish contact. They will be able to help you apply for special exam conditions if needed, which may include:
- extra time
- ability to leave the room for fresh air and food in the middle
- arranging to take the exam on computer
- arranging a scribe so you can dictate answers
- spreading the exams over several days if some are on the same day (you will be locked away for the night so you can t contact your friends!)
- sitting the exam in a separate room, rather than a massive hall
Looking after your health
The four-lettered word that should be your golden rule is PACE! Don t go overboard in Fresher s Week or be bullied into drinking if you don t tolerate alcohol well. You’ll have at least three years to experience everything at your own pace.
Save partying for special occasions and make sure you always have enough money for a taxi home if your walking is limited.
To keep yourself as well as possible:
- get enough sleep and rest; relaxation tapes can help
- eat properly with plenty of fruit and vegetables
- take quality nutritional supplements
- at the first sign of a bug (usually the inevitable Fresher s Flu) rest, hibernate even go home take vitamin C, perhaps a herbal immune support like echinacea, or whatever works for you
When do I tell people I have M.E.?
Tricky. Don’t try and hide it. I did at Oxford, and it just causes more problems, because people take it personally if you keep refusing to go to the pub with them. Give friends AfME s guide to what M.E. is and take time to explain how the illness affects you.
What if it all goes wrong and I have to leave?
Years out during your degree are possible, and easy to set up. The cut off point is sometime in November in order to get that year funded again. It was very easy for me to take two years out from Oxford. Universities really want you to be there, and will do anything to make it possible.
You can also switch universities, even after a year out. I’m now so much happier at Nottingham, and my tutors even say that I m capable of a First (although I’m aiming for a 2:1 as I don’t need the pressure).
Finally, do consider the Open University, which is free if you are on income support. This enables you to study from home at your own pace in a huge range of subjects; an excellent option if being away from home is too much.
Olivia Lakin, is now in her third year studying biology at Nottingham University.
Further information and advice
The Association of Young People with M.E. provide a ‘Uni- Friends’ service and can advise their members contemplating university. See page 47 for AYME s contact details
National Federation of Access Centres offers assessment and training for people with learning disorders or disabilities to improve their access to higher education, tel. 01752 232278
Dept. of Further Education (Student Support Division) tel: 01325 392822. Ask for the Bridging the Gap leaflet for students with special needs
SKILL offer advice for students with disabilities, tel. 0800 328 5050 or email.
The Open University has a disabled students office, tel. 01908 653745
M.E. Open University Support Group. Send SAE and course details to Wendy Maxwell at 97 Holt Road, Hellesdon, Norwich, NR6 6UA
Learn Direct offers general advice and information on adult education, tel. 0800 100900
Virtual Open Days visit uni's online.
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