Do People have a right to know I am disabled?

Do I need to tell people I have an invisible disability?

My name is Lily and I am a first year at the University of Bath. I have Cystic Fibrosis (CF), an invisible disability, (you cannot tell anything is different about me just by looking), which essentially means my lungs and digestive system do not function properly. This requires lots of management, breathing through machines, taking tablets whenever I eat and generally more stress to stay as healthy as possible to avoid severe illness. This can be pretty time-consuming (and quite frankly annoying) when trying to maintain a normal life at university.

The art of reinventing yourself before university

When I first started at the University of Bath, I had the same thought that most people have before university, something along the lines of ‘how can I make myself better and more likeable, I should probably use this opportunity to reinvent myself. After all, going to university presents you with the unique opportunity to leave the ‘old’ you in your hometown, meet completely new people and live in a new city.

For me, this potentially meant not being so upfront about my CF, so people don’t see me as only my illness. I have had a lot of practice telling people I have CF, and the most common reaction is “Oh”- and after they have googled what Cystic Fibrosis is, they are led to believe all the worst-case horror stories, ultimately thinking I am significantly more ‘ill’ than I am. So why wouldn’t I want to stay away from this at Bath? After all, I can essentially do everything any normal 19-year-old can; so do they really need to know?

Why I decided to tell people I have a disability

Ultimately, I did not stop telling people about my CF before starting university, and this decision was for the best. I didn’t exactly introduce myself as “Hi, I’m Lily and my lungs don’t work”, but I brought it up when it came up. This was a good decision because, ultimately, telling people makes my life more convenient. As you can see from the images, being disabled has not prevented me from making friends or having less of a social life at Bath.

CF is a pain. It’s time-consuming and very draining. By telling people about my CF, it made my life a lot easier.  I can simply take my tablets whenever I eat without getting funny looks, and I can say “I need to do my breathing stuff so I might be a bit late”, no questions asked. As well as this, my CF is a part of who I am, I am (just about) managing a lung disease whilst attending lectures, going on nights out and having the complete independence of being at university. That’s pretty impressive, so is not something I feel ashamed of, or feel the need to hide.

How to tell people (if you want to)

I am by no means claiming it is easy to tell people you have a disability, it’s scary, and quite frankly an awkward conversation to have with somebody. There’s a chance it basically involved me saying “Yeah, so, my organs don’t work but I am still well enough to drink these shots with you”. You must make yourself so vulnerable to almost ‘expose’ that part of yourself, even if the person you’re telling shows no difference towards you. I'm doubtful they may, (even if it’s only initially), think of you differently.

I think the best way to tell somebody is just bringing it up in conversation, if you don’t treat it as a big deal, the person you’re telling won’t see it as a big deal either. For me, I can bring it up the first time somebody sees me taking tablets or wherever it seems appropriate and not awkward.

Do people need to know?

Equally, you are not obliged to tell people if you are disabled. Each disability is different for everyone, and I am lucky that I feel able within myself to tell people about my CF, and a big part of this is acceptance within yourself. However, I am a very strong believer that my CF does not define who I am as a person, but it is a part of it. I prefer to see it as adding to who I am.