My Experiences Attending University With Dysautonomia

Moving out of home can be daunting for anyone — a new life, having to do all of your cleaning, cooking and work as well as meeting new friends, learning new things and having a social life. It can be even more daunting having to manage all of these things as well as a complex health condition.

For me one of the hardest things was being around people who knew nothing about my health. At school my close friends knew what to do if some of my symptoms were worsening; they knew when to get a teacher or when to call my mum. They knew I missed a lot of school due to hospital appointments. At the beginning of university no one knew anything. I looked completely healthy to them. After finding out whom I trusted, I started to inform them about what to do in an emergency. Luckily they were very understanding, but it is hard to put your trust in someone you have only known for a few days.

It is also difficult as there is a lot of time where you are by yourself. Don’t get me wrong, I spent lots of time with others, but I also walked a lot of places by myself and that didn’t always end me in the best positions — passing out on the street, having seizures down staircases and ending up in the emergency room after a stranger found me. Those trips could have been avoided if I had someone who knew me and my condition with me.

When I have bad days, it is always hard living away from home — having to cook myself dinner so I don’t take my medicine on an empty stomach, having to force myself to eat the food even when I feel so sick with pain, and having to walk down the road to the shops. I feel isolated when I’m bed bound and not able to move from my little box room.

There is a lot of positive about moving to university with chronic health conditions. I became more independent and started to know my conditions better. I went to appointments by myself, the emergency room by myself and took control of my life. I also found the university was a lot more understanding about chronic health conditions than my school. I got a lot more support to manage my condition while allowing me to succeed at university life. I was able to watch lectures I missed online, my tutor organized any high risk activity to be done on a one-to-one basis, and the student support team were there whenever I needed them. There are many more people with disabilities at university, so I didn’t feel as alone. I have been able to join in with netball clubs and various societies.

Don’t let having a disability put you off going to university. There is so much there to help you, and in my experience it will help you grow and thrive as a person.