Going to university or college can be exciting and daunting
for everyone. However, people who have
an IBD are more likely to face additional challenges and possibly more concerns
than anyone else. Most people are scared
to ask for help from anyone once they go to university as they want to be
independent as much as possible. It is
better to have the support network in place just to be on the safe side just in
case you ever need to use them. Most of
the support available is able to be found from the university’s or college’s
disability services.
What support is on
offer?
Some students say they do not see themselves as having a
disability. However, you may have needs
that other students do not and you might benefit from the support which is on
offer. You may have extreme fatigue
which could result in falling asleep during a lecture so, you may be entitled
to a personal note-taker or a recorder to record the lecture. Or if you are not feeling well and you wish
to go to your lecture and it starts at 9am but you are stuck in the bathroom
and running late, the lecturer will allow you to walk in late and not get
marked absent.
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Voice recorder
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Depending on the university or college some offers flexible
studying options including modular or distance learning. With such a tight course structure it might
be possible to take a break from studying if you have a flare up or you could
work from home for all or part of your course.
All you need to do is speak to your Course Director or Admissions Team
for more information on the course you wish to choose and what they can offer.
Disability support can help you apply for support during
university or college or when you apply for student finance you can do it
yourself. It is up to yourself on what
you decide to choose.
Do I have to tell
anyone that I have an IBD?
It is completely up to yourself if you decide to tell anyone
about your illness. However, if you
decide not to tell anyone in your university or college about it you could miss
out on the support available. Quite a few
universities and colleges encourage students to talk with them so they can
arrange extra support where needed. You
might decide to wait until you have your induction day at your chosen
university or college before you talk to someone in disability support about
your IBD. The first initial talk you can
request to have an informal talk so you can discuss your options without making
any commitments.
When do you find out
what support you are entitled to?
You might be asked to attend an assessment interview unless
the disability support officer starts the process during the initial meeting
with your agreement. You will need to
take a supporting letter from your GP or your Gastroenterologist covering the
symptoms of your condition and how the flare ups might affect you. The advisor may then work with you to come to
an agreement (which is called a Study Needs Agreement or a Personal Learning
Plan) which will outline the support you have requested.
This will be passed on to your student
finance company who will have to agree on it before it gets put into place for
financial reasons. After your student
finance company agrees to it all the disability support advisor will pass it on
to the staff within your department depending on the support needs you have requested.
Am I able to get
financial help?
When you apply for disability support you can ask the
advisor about help you may need with financial.
For example, additional costs for an en suite accommodation in Student
Halls; help with travel costs if you are staying at home or help with buying
good quality computing equipment. It all
depends on what support needs you can be entitled to.
How do I get suitable
accommodation?
The majority of students choose to stay at home with
parents, others decide to live independently as they think it is an important
part of the university experience.
During the first year you might be offered a place in student hall of
residence (if you apply for it) for the first year and this is a good way of
meeting new people. Alternatively you
might decide to look for a private rental accommodation, which is usually a
shared flat or house with other students.
You might ask the university or college disability advisor
to help find you a suitable place for you needs. If you do not have a Study Needs Agreement in
place it might be best to have the supporting letter from your GP or
Gastroenterologist when discussing your accommodation requirements as you might
be able to get an en suite bedroom. If
you decide to look for your accommodation yourself it might be best to think
about the following points when looking for accommodation:
- Has the accommodation an en suite bathroom?
- Do they have its own laundry facilities or a launderette nearby?
- How far is the accommodation from the campus?
- How easy will it be to travel to lectures and other student facilities?
- Is it catered or self-catered accommodation?
- Is there access to a fridge? (Just in case you have medication which needs to be stored at a certain temperature).
What about getting medical
help?
If you are studying away from home it is best to register
with the University Health Service or a local GP. This means you will have to change your
doctor. You can register as a temporary
patient during vacations at your old GP when you go back home. When your register with your new doctor all
of your existing medical records so they will be aware of your condition. Before your move speak with your IBD team at
the hospital as they might be able to point you in the right direction to a
good specialist service. Also make sure
you have a good supply of your medications with you when you leave home and
changing your doctors and register as soon as you can with a new one so you can
get a new prescription before you run out.
Should I speak personally
with my academic staff?
If you have a Study Needs Agreement or something similar,
this will cover who may be given information about your needs including the
academic staff you will be working with.
However, it may be helpful to talk to the Course Director or the Head of
the Department or your Personal Tutor (if you are assigned one) about your IBD
and how it affects you. It may feel
embarrassing about talking to them about your IBD but once they have established
and understanding you will feel less stressed about the idea when asking for
support. The best thing you can do is be
as honest as possible when speaking to any member of staff. The more information the more likely they
will understand what you are going through and might be more flexible around
your studies.
What should I say or
do?
Students with IBD have found the following extremely useful:
- Toilet needs during lecturers or seminars – you might wish to sit closer to the exit or at the end of a row so you can leave extremely quickly if necessary.
- Lateness – you may arrive late because of urgent toilet needs or because of extreme fatigue or painful joints have made it difficult to walk quickly.
- Medication and/or nutritional needs – you might need to take medication or a high energy snack during lecturers or seminars.
- Feeling unwell – there may be times when you are more exhausted than normal or in more pain and need to take a quick nap or return home.
- Missing classes – due to hospital appointments or being unwell at home or in hospital.
- Field trips – you may be concerned about toilet facilities on the journey and at the field trip designation.
- Privacy – you might wish to keep your illness kept private or you may wish to tell your fellow classmates.
What about coursework
deadlines?
The most important concern for many IBD students is
coursework deadlines and getting them handed in on time especially if you are
having a flare up or if you have been admitted to hospital. Some universities and colleges will cover an
extension request in your Study Needs Agreement.
Others may ask that you apply for mitigating
or extenuating circumstances form when you can if you know you will not meet
the deadline. This might mean that the
penalty for late submission is waived and/or you are given the opportunity to
do the piece of coursework again.
Every university and college has different rules so it is
best to check in advance what the policy is just in case you have any problems
with meeting deadlines.
Is there any help
with coping with exam stress?
With the intense pressure of exams and revising in a very
short period of time can affect most people.
The effects can be worse if you find that extreme stress can trigger a
flare up. The best thing to do is pace
your studying out and find ways to help you to relax such as, taking regular exercise,
deep breathing techniques or yoga.
If you have a Study Needs Agreement or you have to talk to
your tutor about your IBD and able to provide a medical certificate from your
doctor you may be able to ask for special arrangements in exams. This might include sitting close to the exit
nearest the toilets, taking the exam in a separate room or extra time. If you are completely unable to sit an exam
due to being extremely unwell you might be able to defer sitting the exam until
you are better without a cap on your grade.
What about telling my
fellow classmates?
Meeting new people is daunting as you do not know how they
will deal with the information you tell them.
It depends on yourself if you prefer to tell people from the start or
after a short period of time. If they
cannot deal with it then they are not likely to become good friends. If you become unwell during the semester then
you can choose to limit the information you give them or tell them you had a
stomach bug.
As you make new friends you will know which approach to take
with them and who is the most likely to be understanding and trustworthy to
talk to about your IBD. Most people
choose to only tell their close friends and use them as the main support and try
to keep the environment as close to it as it was like at home.
Most people are cautious of what they eat and drink
especially when they go to university or college. Quite a few people avoid alcohol during ‘freshers’
week when there tends to be a lot of different activities to help you settle in
and get to know what the university or college has to offer you. If alcohol triggers a flare up you can always
think of a reason for not drinking before so you are prepared to respond to any
comments.
While it can be extremely tempting to throw yourself into
your new life at university or college and enjoy all the new experiences on
offer, but it might be beneficial not to go beyond your limits to fit in. Pushing yourself can make you feel ill for a
longer period of time. This will mean
you would miss out more in the long run.
It can also be hard living without your parents to remind you to take
your medications at the right times. It might
be worthwhile downloading an app to remind you on your phone or putting a big
note on the back of the door so you get reminded before going out the door.
When you have good days it is best to stay on top of your
coursework and readings and being sociable as well. This will help you on your bad days which can
leave you restricted on what you can do.
What other support is
available?
The majority of students experience anxiety at some point
when starting university or college. Sometimes
the pressure of exams, coursework, being away from home for longer periods of
time and feeling isolated when ill. Some
or all of there may become too much to deal with on your own and this is where
the support of friends and family come in.
If you find that you are anxious, stressed or even depressed you can use
the counselling services available at the university or college in complete
confidence.
Some universities and
colleges offer both face to face counselling services and phone based helplines
which you can use. The counselling
services can help with a large number of issues including health related or
dealing with dilemmas or decision making or identity issues. There are also other methods available such
as, online forums and social media sites such as Facebook.
My experience
I was diagnosed with severe Crohn’s disease in the middle of
my placement year (3rd year) of university.
I had a few things already in place from the middle of my first year
through disability support for my asthma and low mood. As soon as I got home from my placement with
my hospital discharge form I had sat down with my disability support advisor
and put in place everything I needed. I
was able to get a laptop, printer, voice recorder and printer credits from the financial
side. Due to me living at home so my
family could support me as I was still learning about my condition and symptoms
I was given extra time to come in if I had lectures or seminars at 9am.
With my extreme fatigue and falling asleep in clases, I was eventually
assigned a personal note taker who sat at the back of the room and took notes and
typed them up after class and emailed them to me. I also had a support worker who helped me
manage my time and other weaknesses which made me panic and then caused a mini
flare up. For exams and class tests I
was given an extra ten minutes for each hour for the exam or test. Also for exams I was in a separate room from
everyone else and there were no more than eight students in the exam room at
any time.
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| My graduation photo |
On most of my good days I had stayed on top of all my
assignments and revision which made it a lot easier for my bad days as I was
able to recover quicker. Most of my
fellow classmates had been told about my condition and some of them were
ignorant and said I could do everything I wanted and my condition did not
prevent me from doing anything but I never listened to them. The people who listened to me give me the
best support possible and even researched it and made it easier for me to
finish my final year even when I kept saying I was going to give up. This support helped me through the last year
and I had graduated with a 2:1. The support
from my family also helped as well the most support I got was from my dad as he
took me to all my hospital appointments and even rearranged most of his to have
his on the same day as mine. This was to
do with company while we had to wait even though we were in two different
clinics.
If anyone has any further questions please feel free to leave a comment or email me privately using smurfasaurus92@gmail.com
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