Answer by Victoria Clutton:

Going back to university to try and finish my degree.

That sounds trivial, here's why it wasn't.

I was a close to straight A student in school, but I contracted c.f.s/m.e (essentially it's a fatigue disorder) when I was 16. Unfortunately I had it severely which meant years of being bed ridden, wheelchair bound, unable to stay awake for more than a few hours at a time and so cognitively impaired I couldn't read any more.

My mum was amazing, she kept working but was my sole carer throughout as the rest of the family wouldn't help. She passed away very suddenly 6 years ago. When she passed away I was still house bound, mostly bed bound and completely confined to a wheelchair but I managed to learn to take care of myself and, with the help of some truly wonderful friends and some specialists, I started to improve.

I never quite gave up on my academics even when things were pretty bad and my mum always desperately wanted me to have a degree so I'd sort of struggled through bits and pieces of education over the years though my health kept meaning I had to stop or drop out. I scraped through my A-levels in 4 years. I decided to try and go to university straight after that but had to come home after three months and spent the next couple of years recovering. I started a Maths degree with the Open University (a distance learning university) in 2004 and squeezed through a couple of modules there before the m.e. temporarily won again then switched to a Computing higher education qualification at my local college in 2007. I tried to keep going at college after mum died but I was barely managing the basics like feeding myself so I had to drop out, again.

Once I was managing absolutely basic life tasks reasonably well and given that at this point my track record with trying to get a degree was pretty disastrous I decided that the sensible thing to do was to qualify for basic administrative work. I did that from home in 2010 with a view to getting myself to the point where I could manage a job first and then think about my degree. So, when I thought I could manage it at the start of 2011, I started to volunteer as an administrator for a couple of organisations that had really helped me over the years; the m.e. clinic I was sent to after my mum passed away and the organisation that helped me fill in the disability forms for benefits when I was too sick to really understand what was happening.  I only volunteered for 6 hours a week but it was exhausting and I missed a lot of days. While I'm really glad I did it and stayed for close to a year, I didn't enjoy the work.

I found out about 6 months into that year of volunteering that the Open University was changing it's rules and that if you had an incomplete degree with them but didn't do a course this coming academic year you'd be subject to a lot of rule changes and a heft price hike. Almost just idly I started to research whether I'd be able to go back and get funding etc. I transferred the credits from my year of college across (which combined with my OU courses to give me 1/3rd of a degree) and changed my degree to a combined 'maths and computer science' BSc. By mid-November I'd figured out that I could get funding and I would be allowed to do the number of hours of study without affecting my disability benefits (as long as I gave up the voluntary work) and found a course I wanted to do that started in January. That didn't give me much time to decide what to do.

It was a difficult decision for me for a few reasons.

While I'd done OU courses before and achieved good grades they were smaller, introductory level courses that I'd really struggled with. I'd also done nothing academically challenging for a few years while I was getting to grips with taking care of myself and starting to recover from the m.e properly. I was still really struggling to read for long periods and remember things. I didn't know if I was really smart enough any more for it to be worth my doing a degree. Even if I was smart enough, was I too old to get a decent and interesting job as a graduate?

The work load was also terrifying. Saying yes meant committing to 16 hours a week. I was barely coping with 6 hours of voluntary work and I had a really bad track record when it came to being able to stay well enough to complete courses. It also pretty much meant giving up everything else (voluntary work, my first few little attempts at a social life).

Finally, it meant choosing a much more difficult long term path for myself. Because of how benefits work in the UK, if you are doing more than 16 total hours of volunteering, work or study a week, you're not disabled which means tiny benefits and they very strongly encourage you into full time work. If I didn't do the degree I could work my hours up slowly and make sure I could manage a part time job before I actually took one on and not risk losing all my benefits until I was sure I could support myself. Doing the degree would mean putting myself at that 16 hour cap so any attempts at work would put me over the tipping point. That meant I'd either have to go straight from nothing to at least part-time if not full-time work or try and hold out on very minimal benefits for long enough to finish my degree and then apply for graduate positions with no evidence that I could hold down a job. Neither of those options was exactly ideal.

In the end I made myself a promise. I'd do the course but if I couldn't cope with the work load or my health started to get worse or I didn't get a really good grade that would be it. No more wishful thinking, I'd give up on trying for a degree and accept that I'd probably have to find fulfilment and happiness outside my job like most people do.

That year was possibly the hardest thing I've ever done, I found out later that the course I chose is the most infamously punishing, workload heavy STEM course the university offers. Exam day was a disaster, the m.e symptoms hit me like a truck about half way through the paper and I did the second half slumped on the desk writing ever more slowly and less legibly. After the invigilator left I immediately went to bed to pass out and then spent the next few months reminding myself of my promise and deciding that if I had, by some miracle, managed a high 2:1 I could keep studying.

Getting 100% on that exam is one of the best moments of my life so far, it changed everything that I thought I could hope for and a lot of what I'd come to believe about myself.

It's a couple of years (5 more firsts and relearning to walk) later now and I'm coming to the sticking point. Work will be 'soon' for me, not quite yet but soon, and I still have one year of degree left. It's kind of terrifying to be honest. However, even if trying to start work goes disastrously wrong or I have to put off finishing my degree again, I think I made the right choice.

What has been the toughest decision of your life? Did it turn out to be the right one?


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