Friday, 28 June 2013

Tackling Uni with a chronic illness

At the request of a recent commenter on my Intro post, this post is about coping with Uni with a chronic illness. It's a big topic, but I hope some of this info is useful for some of you out there :)

It's difficult to be at Uni with a condition that seriously interferes with your every day life. It's hard to be unable to drink alcohol living in an environment where alcohol and clubbing plays a large part in people's social lives. It's challenging to miss out on so much because you simply don't feel well enough to join in.

It is, however, a fantastic thing to continue to do. I am proud and grateful to still be at university, and it gives me a focus and a purpose. I can see myself making progress at something which helps to keep me motivated. More than anything, it gives me a reason to get out of bed in the morning, and gives me something to focus on to distract me from the constant pain.

I can't achieve a lot away from Uni but at Uni I can work towards the same things as my peers. Educationally we are equals. I may be unable to keep up with them physically but I can get a degree the same as theirs. Yes, I need a few adjustments along the way, but I can reach the same endpoint which is satisfying!

In terms of adjustments, there is a significant amount of help available. The first thing to do if you are at university with a chronic illness is to apply for Disabled Students Allowances. Yep, if you're anything like me you will despise being classed as 'disabled', but applying for DSAs is the first step to getting a lot of incredibly helpful support. (These can be applied for before you go to Uni if you're in the process of applying and A-levels etc, allowing support to be in place from day 1)

You can be supplied with a lot of equipment: a laptop with a lot of very helpful software (dyslexia software and software that reads all your work out to you etc), a printer with scanner, an ergonomic desk chair, ergonomic keyboard and mouse, laptop bag on wheels, voice recorder for recording lectures.. Can't think of anything else right now- but basically lots of stuff to make life as easy as possible and reduce the impact of your illness.

They pay the difference between public transport and taxis if you have difficulty using public transport too, which I imagine is particularly useful if you live a while away from Uni. My advice would be to live as close to Uni as possible though- rests/naps during the day can really really help if you have a busy schedule. You also get allowances for printing and some textbooks.

DSAs can also pay for support workers- absolutely life saving!! You can have note takers with you in lectures so that you can focus on listening instead of writing notes. You can have a mentor to meet with to help you stay organised with work and deadlines, and they can help by sitting with you while you're working to help with word finding problems and to keep you on task. You can also get support workers to help with anything course-specific made more difficult by your condition.

Obviously all this stuff doesn't just automatically get thrown at you because you're ill, you have to have a lengthy 'needs assessment', but I found that they were very much on my side and recommended anything that they felt would help me. They recommend things based on your individual symptoms and challenges, but they recommend anything and everything they feel would be beneficial for your particular circumstances, and you have a lot of influence because they work with you throughout the assessment to work out your preferences.

3 quotes are obtained for everything recommended and the entire report is then sent to your funding body (you have the option of seeing it first if you wish). Your funding body will then most likely choose the cheapest quote but agree to everything.

If you have a change in circumstances and need some extra help or think of something that would be useful later on, your university disability advisor can recommend this to your funding body and it can be arranged (e.g. Extra hours of mentoring following a relapse that you're taking a long time to fully settle out of).

There is also a lot of support available within most universities- disability advisers are a fantastic place to start. You can get extra time and time for breaks in exams if appropriate, and can get your exam schedule altered if you have multiple exams in one day and you aren't able to do this for medical reasons. Disability services can help with giving the appropriate information to your department, or liaising with them when course-specific adjustments need to be made.

It can be difficult to know what information to share with whom, but just trust your instincts. Try to be comfortable and confident enough in yourself to not freak out when the topic comes up. In my experience, I've found it best to be open and honest with people, but only answer the questions they ask as opposed to overwhelming them with your full medical history. This also counts for your friends too- it's not like school, you're away from home and are likely to need a lot of support from your friends at times to get you through difficult patches, and they also need to understand the reasons why you don't always do your share around the house if you become housemates. At school I was very cagey and told people very little, but at Uni, your friends are like a new family- you need to let them in to have a support network you can rely on.

My advice on coping with Uni would be don't give up but don't try to keep up with healthy students. Recognise when rest will be more beneficial than pushing through. Most importantly: accept help! Don't let your pride get in the way of you getting the necessary support. Admitting you have complicated medical problems affecting the way you can do things is difficult, but it's better to admit there's a problem early on rather than not achieving what you could have achieved because you didn't tell anyone about your difficulties so didn't receive the appropriate support.

Uni with CFS is far from easy. There will probably be times when you are in bed and your friends are out having fun. There will be a lot of times when you can't revise as well as you would like because your symptoms are exacerbated by the stress of the exams or overworking yourself with revision. There will probably be times when you have a relapse and wonder how on earth everything is going to work out. You will probably consider quitting at least a few times every year because your symptoms are horrible. Maybe you'll even have to take some time out from your course at some point, or will have to delay an exam or 2 if you have badly-timed relapses or a further deterioration in health to adapt to. Don't beat yourself up if this happens, it's not under your control (I would advise finding a good doctor- GP or specialist- who is willing to back you up if you run into any problems and need adjustments though, and you do have control over that! A good GP or specialist is invaluable whatever your circumstances, so do go to the trouble of searching one out!). I would say do try to stick it out though, as long as you're not harming yourself, as the satisfaction of every hurdle overcome is huge. Get the support you need, look after yourself as best you can and keep looking forward! Good luck!!

(Any questions from anyone about any of this do let me know in the comments and I'll try to help!)

5 comments:

  1. I am in exactly the same situation as you and was wondering if you can offer any insight into what you plan to do after uni. Friends around me seem to be applying for various high demanding grad schemes, a path which I used to think I would take before becoming ill. However in my current state I struggle with my 6 hours a week of lectures and the possibility of a job after uni seems unthinkable! Do you ever fear that you will be left with nothing to do and an insubstantial income? I need inspiration on jobs that I could cope with as a CFS/Fibro sufferer!

    ReplyDelete
    Replies
    1. Haha, this is a tough one.. I was actually talking to someone about this today.. CFS-friendly jobs are very few and far between... Would happily chat to you more about specifics if you want to message the blog's facebook page (facebook.com/jesscfs) or if you post your e-mail address here I won't moderate it through but will send you through an e-mail :) Lots of luck for the future!

      Delete
  2. Isn't it so weird to think that you wrote this post when we didn't know each other all because I requested it the first time I'd ever looked at your blog - and look at us now! Firm friends and in the same position of being on university medical leave. Thanks for being such a fabulous constant source of support for me, Jess :)

    ReplyDelete
    Replies
    1. Haha, that is such a strange thought!!! I'd forgotten it was even you who asked for it- lol. It's so amazing to be in contact with someone in the same position- thanks for being awesome! :D Big hugs! <3 <3 XX

      Delete
    2. PS looking back at this now is weird: "Maybe you'll even have to take some time out from your course at some point," little did I know.... Ah well, we'll get there!! X

      Delete