Studying with MS
I began a postgraduate qualification in September 2016. For anyone studying and working at the same time, it can be challenging but for someone with a disability or a health condition, it can feel more overwhelming and frustrating without the right level of support.
According to HESA, in 2016/17, of the 2,317.880 total figure of students studying in the UK, there were 27,9115 (12%) students declared themselves disabled. But that is just those who disclosed their disability to their university. Others choose not to because they fear the stigma associated with a health condition, or they may just not be aware of the support that the university can offer. For years after diagnosis, I didn't consider myself to be disabled; perhaps others don't either. Some don't want to do anything that means they are given extra advantage or are not be progressed by means of their own merit. My argument is if you need some support, you're not gaining an advantage, you're actually creating the same level playing field as everyone else.
Most higher education institutions have specific support in the form of disability advisers; some have specialist expertise. They are often the people to turn to if you need support with special exam arrangements or with a department that may just not 'get' the emotional, physical and/or mental issues MSers face. They can help you with all sorts of things, not least the DSA, which you may qualify for, and which might help pay for specialist equipment, furniture, software, travel, etc. The sooner you can do this, the better as it can take a while to go through.
Aside from perhaps the more obvious physical barriers that those with MS encounter, universities may not always see the impairment of cognitive function: information processing, planning and prioritising, memory (retrieving at short notice), word-finding. When I began studying for the first time in nearly twenty years, I found the integration process difficult. I don't mean fitting in or contributing in lectures, but more in the absorption of the reading, communicating structured arguments in my writing, and providing in depth critical analysis. I would spend half an hour reading a journal article, re-reading the same passages, which meant I had to set aside much more reading time than my peers. (so much so, I took annual leave from work to compensate). Highlighting this to my personal tutor, I was dismissed with 'Give yourself a break, it's been a while since you studied', in the nicest possible, well intentioned way. But I knew this was the MS, something that I hadn't encountered at university. Experiencing cognitive impairment can be frustrating, especially if you know you can do it, and can cause a good deal of anxiety.
There are no definitive studies on how many students face mental health issues at university. I've read a You Gov report which says one in four students, an NUS survey that says close to 80%, and everywhere in between since. Either way, it's an issue that cannot be ignored, and one that includes student MSers. Aside from the anxiety and frustration I faced, I found academic writing difficult without feedback from my lecturers. Pushing them on this, one took a look at a page of writing, and this small steer set me up for the rest of the year. I learned to adapt, using the specialist software provided me, and developed small study hacks that meant I finally performed at my best.
So, what can student MSers do to glean support and to look after themselves?
Get support
If you decide to disclose to your university (and I would encourage you to, due to what you can gain in support), here are some thoughts:
1. Get a letter from your MS care team/ GP detailing what you currently experience and outlining things the university can put into practice with you.
2. Seek out support from your disability advisers. If you don't know where they are, talk to the student helpdesk (there's always one) or the students union.
3. Let your personal tutor and departmental administrators know so they are kept in the loop, in case something comes up during the year. Keep to key, relevant messages, e.g. your needs.
4. Through my DSA, I received Dragon software, which allows you to dictate when your body just gets too tired physically, and before the cognition starts to fail.
5. Ask for support from those around you, i.e. friends and family. If you're being tempted away from routine and you feel you really need it, think to yourself that you're the one than needs this time and others don't have your challenges. You'll feel more assertive in asking them for their help in understanding the situation.
6. Apply for the DSA as soon as you start at university. It's not about financial help, it's about giving you canny tools to help your thinking. If things change, you can always go back for a future needs assessment.
7. If things get too much, either seek out the university's counselling service or make an appointment to see you GP. Everyone needs help from time to time.
7. If things get too much, either seek out the university's counselling service or make an appointment to see you GP. Everyone needs help from time to time.
Look after yourself
8. If a symptom happens over and over again then don't ignore it. Take a step back, write out the issue if this helps, but address it by telling someone about it (MS nurse? Department?).
9. Give yourself regular breaks. This will allow you a breather between activities but will also you to build in time to reflect on what you've learned and to plan ahead.
Feel more in control
10. Use whatever you can to get organised and plan. Whether it's an app, or a phone reminder or a to-do list, you'll feel really in control when you're prompted to remember what's coming up and can manoeuvre life around it. Tip: don't use more than two planning tools as it will soon do the opposite!
11. Get into a routine that includes the work but also allows you to plan out the timings of future assignments, e.g. if you have an essay due in late January, when will you write it? when do you read for it? Do you have time for Christmas? (Obviously, I'm joking, though, I should never joke about Christmas!)
12. Prioritising. You've probably already worked out that you might need a bit longer to get things straight in your head before starting an assignment. It's a bit like eating an elephant, you can only do it one bite at a time! In other words, give yourself small chunks of work so you feel like you've achieved. If you're on a roll and can't stop after two hours, then you might need to prepare for the fatigue onslaught you may experience.
Your environment
13 (because I'm a rebel). A change in environment really helps me write essays. I'm not one for open plan noise, or for Netflix temptation, so when I need to study I head off to the library and put in headphones. I'm not listening to anything, but it cancels out everyone else whilst I work!
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