My name is Lily and I am studying Health and Exercise Science. I also have an invisible disability called Cystic Fibrosis (CF). To summarise, this basically means my lungs and digestive system don’t work properly. This requires hours of breathing treatments each day to prevent infections, and lots of tablets to aid digestion of food, treat infections and allow my organs to function more effectively.
Moving to Bath was a big change, as I would be managing this entirely independently with all new people to have the “I look normal but my lungs don’t work” conversation. Here are some things I wish I had known before moving to the University of Bath with an invisible illness that needs heavy management.
People may look at you differently when they find out you’re “ill”
And that is OK, it shows they care, if you want to change this, you prove it. When I moved to Bath, I was determined to not allow CF to be my entire personality trait. I have gone through my whole life not allowing my CF to define me, no matter how ill I got, and I did not want that to change. After a few nights out, and once people got to know me, my deteriorating lungs were not my defining factor.
If you want people to know that you have an illness, just tell them
This is scary, and if you have an illness you do not like people knowing about, this may sound as ridiculous as “if you are homeless, just buy a house”- as you’re putting yourself out there, being totally vulnerable. I would recommend just bringing it up in conversation, as having an illness is a big deal, but it is not who you are as a person. Equally, you are not required to tell anybody anything personal at all, just go with what feels right, but don’t be ashamed of who you are.
Pace yourself, but don’t let anything hold you back
It will be so much easier to think you can’t do something. As an example, going out on a weeknight, initially, wouldn’t have been something I even considered once lectures started, due to the time needed for my morning set of breathing treatments. But once I took a step back, I realised that if I manage my time correctly, I have no reason to miss out on these experiences, and I should really think about things before I just say no.
Equally, when prioritising different things, your health must be the priority that takes the lead
If you get ill as a result of prioritising something else (whether it's nights out, the gym or university work), it just won’t be worth it in the long term. With CF, in particular, my health can get bad frighteningly quickly, (when there are colds going around it's almost guaranteed I will end up on antibiotics for my lungs), so it’s best to avoid this wherever possible, missing out on one night is much better than having to go home for 2 weeks due to being ill (I learnt this the hard way).
Your mental health is just as important as your physical health
Remember to check in on yourself, (and your friends), not solely focusing on physical illness management. Just because your mental health isn’t as obvious, doesn’t mean it isn’t important.
Why you shouldn't (?) listen to my advice
I am absolutely no expert on all disabilities, but I have lived with one for 18 years and I speak from experience. Having been in university for a few months now, I have found that I got into a routine with managing my illness very quickly. This was made easier by not hiding this part of myself. Whilst I strongly believe my CF is not who I am, and will always believe this, it is a big factor of who I am in the best possible way.
I am managing a progressive disease whilst being a university student, which I think is pretty cool, so I have no plans to hide that part of myself (and you shouldn’t too).