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.

Getty image by Rawpixel.

Find this story helpful? Share it with someone you care about.

Related to Dysautonomia

10 Myths About Dysautonomia That Make It Even Harder to Live With

10 Myths About Dysautonomia That Make It Even Harder to Live With

Dysautonomic is an umbrella term for medical conditions in which the autonomic nervous system (ANS) malfunctions. Since the ANS controls automatic bodily functions such as heart rate or temperature regulation, those with a form of dysautonomia may experience symptoms such as lightheadedness, fainting, unstable blood pressure, abnormal heart rates or inability to regulate temperature. Some of the more common [...]
A young woman sitting on her ed with her head resting on her knees.

What It's Like to Be a Teenager Who Uses a Catheter

One thing a lot of people don’t know about me is that sometimes I can’t use the toilet like everyone else. I’m now 19, go to university, go out with my friends, I love playing the piano and doing sport. Having a catheter is something that I have always just kept to myself. It’s not [...]
woman wearing a face mask filter, and woman with IV in her arm

21 Side Effects of Dysautonomia We Don't Talk About – in Photos

Dysautonomia is typically described as an “autonomic nervous system disorder,” and may often be known for symptoms such as dizziness and fainting upon standing. But dysautonomia is an umbrella term for disorders of the autonomic nervous system, each of which has their own unique set of symptoms and diagnostic criteria, so people with dysautonomia may experience a wide [...]
Nick and Tori Foles

Thank You, Nick and Tori Foles, From a Fellow Dysautonomia Warrior

It has been two years since I heard the word “dysautonomia” for the first time. When my mom and I went to a cardiologist to see if we could get to the bottom of my fainting spells, I had no idea I would leave with a diagnosis that would change my life forever. It just [...]