My name is Lily and I study Health and Exercise Sciences at the University of Bath, I also live with an invisible disability called Cystic fibrosis (CF), which means you cannot tell I am disabled by looking at me, but my lungs and digestive system do not function without regular treatments and medication. Moving to university is a big change for anybody, especially if you are disabled.
Here are some things I wish I knew about how my university experience could be different as a result of CF.
CF means I have a lot of extra responsibilities
I was very good at ignoring how much my mum did for me regarding my CF. Moving to a new city to look after yourself full time is a huge change for anybody. This can be especially challenging with a disability. It is easy to be in a bubble, shielded by the comfort of your hometown and be very mentally unprepared for the increase in responsibility, so I think this is something good to be aware of.
Sorting tablets, cleaning all the breathing machines and staying on top of monitoring my health to decide if I need to go on antibiotics or anything were all responsibilities I wasn’t used to doing myself full time. This is obviously alongside all the other things I wasn’t doing for myself every single day, such as cooking and cleaning.
Ableism: discrimination in favour of able-bodied people
This is going to be present wherever you go. People will make assumptions based on what they see, so being visibly disabled can only make this more challenging for people. Since Cystic Fibrosis is an invisible disability, I have not experienced this. However, it is easy to assume I am completely fine because I do not look disabled, and on the outside, I do live my life as your typical first-year university student.
However, behind the scenes, hours of treatments, pills and hospital visits go into maintaining my health so that I can be ‘normal’. People will make assumptions and think they know more about your disability than you do. You tell somebody your lungs don’t work well and suddenly everybody is a doctor, telling me what might help as if I haven’t been managing it for myself for 19 years.
Remember that you know yourself better than anyone, so your mindset should not be changed based on what other people say. Also, at the end of the day, people usually have good intentions.
Many disabilities, visible or invisible come with a life expectancy, a label branding how long you’re predicted to live. For CF this sits at about 45 years, which is daunting when you initially hear it. However, the main thing that bothers me about this number is it's one of the first things you see if you search for ‘Cystic Fibrosis’. I know many people I meet search CF after finding out I have it and it is due to a lack of CF awareness.
I do not want this number to be what people think of me, as well as all the other things that will come up if you research CF. As googling a disability will never give an accurate representation of an individual’s experience. This is something I have always been aware of but is more relevant having moved to university because meeting lots of new people is inevitable. So lots more friends may make the wrong assumption (which is easily done) as a result of something they have read online about disabilities.
At the end of the day, I have never lived without CF, and I am very aware people can have very good intentions, but still make the wrong comments or predictions about disabilities. These are just a few things to be prepared for if you have a disability, as nobody can fully understand your experience unless you communicate with them. This can be hard when moving to a new city since you want to leave a good impression on the people you have just met.
Your disability is only a part of who you are and makes you a better version of yourself. You just have to prove this to the people around you. I am very lucky to have found amazing friends at Bath.