Living with nephrotic syndrome, I was always worried about how it would affect my ability to go to university. When I applied I had only been diagnosed for three years, so I really didn’t know what I was capable of. I spent the whole year after I applied worrying I wouldn’t be able to cope.
However, here I am writing this as an English gradate, who got through my undergraduate program in spite of six relapses, being steroid dependent and sometimes having bit of swelling. After making it through, I thought I’d focus a little less on nephrotic syndrome and a bit more on life with a chronic illness or as I’ve now come to know it: being a spoonie.
As I’ve just finished my journey and a lot of people are just starting university, I thought I’d take a little look at the things that helped get me through. So here are six simple little tips that might help those who are struggling with fighting illnesses as well as making a new start.
1) Make sure the university knows your specific situation. Don’t be like me! Do not leave it until you are suffering through a bad patch or relapse to inform your tutors what you are going through. I was lucky that timetabling helped me so I could get home for my specialist appointments, and even though my tutors told me I could have extensions on due dates if I needed it, I was lucky I always managed to keep up. However, I can’t stress enough if you need support or an extra week on you essay always ask; in my experience lecturers really do want to help.
2) Try not to focus on your differences. It’s easy to get stuck in the mindset that you are going to stick out because you’re struggling with your health, but honestly so many people are dealing with so many different things, you are not going to be the only one worrying. You have as much right to be at university as anyone; you might not be the last one standing 3 a.m. on student night, but that really isn’t what it means to enjoy university. I often had to make the choice of whether I went for a drink or got enough sleep for my 9 a.m. class (often sleep won.) Pick the times that suit you to go out and socialize; it’s your experience after all.
3) Share with your friends and housemates. Honestly, showing my flatmates my dipsticks for nephrotic syndrome and everyone dipping their pee in is one of the most surreal and funny experiences of my time at university. It worked though; I wasn’t embarrassed to share anything with anyone after that. My friends have always been fabulous and acted as my support network (even if I was a bit of a flake and never made it to the end of nights out.) Sharing is caring, and you are never going to be able to form close friendships without letting them know what you deal with on a day to day basis. If I was moody or upset, my friends understood why, which meant I didn’t shut them out when I felt bad. You are going to spend three years living in each others’ pockets; make the most of getting to know each other.
4) Never push yourself too hard. For me, this is one of the most important things and I’m still on a bit if a learning curve with it myself. Always give yourself “me time.” Yes, you might have an essay due, but give yourself a plan so you can do it a bit at a time and not overload yourself. If you need a bath and to just watch “Friends” on Netflix, then set a night aside and come back to your work with fresh eyes. At the moment I’m still trying to find my balance with my new course, and I can feel the effects of pushing myself, so look after yourself. Remember if you are feeling at your worst, ask for help. Get that extra time or some help from your tutor; take the pressure off and let yourself feel better. You have a legitimate reason to ask for help and people will request extensions for far “stranger” things.
5) It’s OK to go home. I will tell you one thing, I’m homesick right now and I’m 22. Do not beat yourself up on feeling low or wanting to go home for a roast dinner and a bit of TLC from your family. Nearly everyone that moves to university misses home, and we are fighting all the time to stay well, so taking on a great big move is always going to prove difficult and takes a bit of adjustment. For me, I chose not to change specialists because I could get home for appointments and it gave me one less thing to worry about. You have to just do whatever suits you best.
6) Get plenty of sleep. My favorite pastime after my treatment is sleeping. I am struggling to adjust to the early mornings that come with my placement. However, university is different. How much you sleep is up to you. Don’t be afraid to say you need a night off. In first year, I went to a friend’s to watch a bake off on Wednesday night, but it made me feel so much better for the rest of the week. I’ve turned down nights out because I knew I couldn’t be successful in my classes on five hours sleep. This is where the spoonie metaphor comes in: you can use your spoons on what you like, but remember your friends, if they are well, will have more spoons to use up. So don’t hurt yourself trying to keep up.
All that’s left to say is my time at university were the best three years of my life. Enjoy yourself.
Equally, if it’s not for you, do not be afraid to admit it.
You can always do something else.
Make the most of whatever you choose to do, and always put yourself first.