University and me: four young people with arthritis share their experiences
Going to university and getting used to the new lifestyle whilst managing your condition can be very overwhelming. There’s lots to think about, especially if you’re moving away from home. We spoke to four young people about their university experiences and how they’ve made things work for them.
Anything you can do in advance, do it: Izzie Clough
Izzie was diagnosed with juvenile idiopathic arthritis when she was nine. Now 22 and about to finish her master’s in modern history at the University of York, she has been through most of school, GCSE’s, and her undergraduate degree whilst managing her arthritis. Here she shares her advice for other young people about to start university with a long-term condition.
“My injection has to be kept in the fridge so one of my biggest worries (and quite rightly so) was sharing a fridge with 11-12 other people in halls. I contacted the university and asked if I could have a mini-fridge in my room, which they were happy to allow. It’s less of an issue now because I know the people I share a house with, but in first year it’s all a big unknown.
“Definitely declare your condition and don’t be afraid to chase people and push back if your needs aren’t met. It’s good to look into access around the uni, and any special equipment you might need. I told them about my arthritis but was still put on the top floor of flats, so make sure you’re comfortable with the accommodation you receive.
Ask for help when you need it
“Ask for extended deadlines and extra time if you need them. There’s a lot of shame about asking for an extension but there shouldn’t be. I told my tutor when I wasn’t well, and they were really sympathetic and told me to focus on getting better first. Don’t feel embarrassed, you’re not going to be the only one with a disability or health condition, you’ll be surprised how many people do.
“Telling people about your condition depends on the individual. I had always been on a strictly need to know basis, but we’re all different. If friends asked why I had a fridge I explained. I talk more openly about it now, you realise that people are a lot more mature and understanding at uni, and you don’t have to worry about fitting in.
Look after yourself
“One of the hardest things is not even the pain, it’s the fatigue. You want to join in with everything and FOMO is such a real thing. But it’s important to accept that you have to look after yourself first. You don’t have to go on every night out, and you’ll realise that there’s always the next one. Even just go along to pre drinks without going out afterwards – it’s often the best part of the night anyway!
“Freshers flu – everyone gets it. And if you’re on immunosuppressants, it can last a lot longer. Try to take time to rest and don’t push yourself to the limit.
“You might be thinking about the clubs you’ll join. I couldn’t do the competitive ones, but I didn’t mind. There’s always plenty to get involved in. My arthritis affects my physical activity, but I was still a cheerleader when I was an undergrad. You can usually find ways to make it work for you.
My best advice is just to ignore what other people are doing and enjoy your time. It’s really not a big deal if you don’t do everything.”
Open University: Hope Graham
Hope was diagnosed with juvenile idiopathic arthritis when she was eight. She has found Open University to be a flexible option that works around her, and her life. In her spare time Hope has been helping her mum set up a charity helping people with breast cancer.
“I have found The Open University a perfect match for me and my condition because I can choose how many modules I do at one time, and if I need to take a break from studies or if I decide to choose a different subject to study the OU is completely flexible.
“It operates on a pay as you go basis and I have found it really beneficial to choose the intensity and length of study. Modules are also taught 80% online and the in-person study days are not compulsory so it’s great for people who may not feel well enough to attend classes etc.
“My experience with the tutors has also been great, they are on the end of the phone when you need them, and always do their best to accommodate me when I need extensions etc. for essays or coursework.”
Never feel embarrassed: Shannon Kelly
Shannon was diagnosed with rheumatoid arthritis aged 17 just two weeks into her final year of A-Levels and despite the impact of her condition she has not let anything stand in her way of going to university and following her career dreams. Shannon recently has recently set up her own blog Life with Arthritis to raise more awareness for the condition.
“I had to do an extra year at school because of my arthritis, but I ended up where I wanted. So the likes of “no matter how long it took or how many barriers were thrown in my way I eventually got there in the end”.
“I always feel disheartened when I see people doing better than me at University but then I remember that they aren’t dealing with the daily struggle that I deal with, so when I’m feeling down I pat myself on the back knowing that I actually got out of bed on that day and went to uni, and everything else is a bonus.
“Universities are so understanding so don’t be afraid to make them aware of your situation. It can also be tough trying to balance medication, side effects and university together but just do what you can and take your time, it isn’t a race."
“Universities will be able to help you, I was allocated a separate room, extra time and a scribe if I needed to use one. Never feel embarrassed to ask for help.”
Self-care: Suruthi Gnanenthiran
Suruthi shares some of her top tips for making university more manageable with rheumatoid arthritis.
“Take it easy. If your body is telling you it's not feeling great, listen! Missing one night out isn't a big deal but pushing yourself too far can lead to you being very burnt out and sore for many days simply because you didn't rest that one evening."
“Don't forget your self-care. University life can be very busy, especially as the term goes on where deadlines are approaching, and exams are close. It's very important you still put your health above your education and take time to rest. Whether it's a weekly bubble bath with some candles, or a Sunday night in with some movies and a videocall to your parents, make sure you take time for yourself. These little things can help you feel so much better, both physically and mentally!”
University & Me event
Our Young People and Families service is holding its next ‘University & Me’ event in October for anyone looking at going, or maybe already there, to find out more about university life and what support is available. Find out more and sign up for the event here.
Share your story
If you’d like to share your experiences of living with arthritis or have any advice for others, please email us at firstname.lastname@example.org.
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