Hi everyone. The first part of this month's blog has been written by Katie. She has shared her experiences of studying whilst living with lupus. Thank you so much Katie for taking the time to write your story for us.
I was 16 when I was diagnosed with lupus, a week before I was due to start Sixth Form College. It was a really good Sixth Form, which involved me getting a bus to the train station and then a train to Huddersfield. I spent almost 3 hours travelling in total every day.
I was really very ill when I started and of course I turned up to the very first day - because I'm that kind of girl.
My lupus manifested in very-almost kidney failure. I had swelled up with water in my legs, my stomach, my back and my face. In addition to this, I was put on steroids, amongst other medication, which caused me to get acne. As a sixteen year old starting a new place where I only knew about ten people, it was a nightmare situation. It took me a long time to feel confident enough to make friends.
It also wasn't easy due to the fact in my first year (AS Levels) I was only in college 60% of the time. My life was very simple - I slept and ate and travelled and worked. I woke up at 5:30am, I went to college, I came home, I did my coursework and I went to bed at 7:30pm. It was a nightmare that I thought would never end. I struggled with my confidence, I struggled to have anything interesting to do or say and as far as I was concerned I no longer had anything special about me. As I expanded and shrunk for various reasons including my medication I also became covered in stretch marks, my skin was also so fragile that water just leaked through partially permeable holes in my skin. I had to wear TENA pads on my stomach, held in place by massive underpants. I became a shrinking violet.
To put that in context, in high school I did everything. I was well liked, I was on the school council (my school was very sheltered and Catholic, so this wasn't too nerdy!) and I ran for youth parliament positions. I did a lot of charity projects and I was in school plays. I was extremely confident.
On the bright side (ha) I had nothing better to do but work. Even though I missed 40% (!!) of college in that first year, in my AS levels I managed to come out with two As and two Bs.
This was despite the fact that I was sick nearly every single morning (I was sometimes sick when I got there) and I literally needed to pee every half hour. I also had all this sudden extra weight to carry around with me. It was like being pregnant with absolutely no good bits.
In the second year things got better. I was less tired, on fewer steroids, my swelling slowly subsided, my skin got better and I regained my confidence. I carried on doing four A-levels plus general studies and an extended project (because I was crazy and I didn't listen to people telling me that I needed to look after myself - but I don't regret it). I got AAAAB + A in my extended project because I powered through. It was hard, but I was getting better. Things were getting easier - I could get to college without having to turn around and go home as soon as I got to the train station.
I got into Durham University. I'm a Law student and I have lupus. When I was diagnosed this is what I wanted to be doing, and I remember thinking that I might not be able to. I remember them telling me that I had to avoid stressful situations to not worsen my illness and I was told my treatment might not work. I was told I might need to come in twice a week for chemotherapy. I had asked them if I was going to die - they answered with, “Well... It's a very serious illness Katie'.
Almost four years later I’m now into the second year of my law degree and I obviously haven't died. My illness is under control, and I never did have to have that chemo.
I won a law competition in my first year, I go into schools to teach them how to do mock court cases, I am the student rep for my year group in the law department and I'm the disabilities rep for my college. I get tired (of course I do), and sometimes I worry about stress and I worry about the future; Am I going to be able to have kids? Is this more important to me than my dream job? Will I get ill again? Will lupus be what kills me? I'm only 20 now so I hope all my troubles are pretty far behind me and pretty far ahead. Student finance has given me a free printer amongst other cool useful stuff because of my illness, which is nice of them. I still go to the doctors every four months. There's talk of them reducing my 'maintenance' dose soon, but we'll see. I'm happy, reasonably healthy, doing ‘reasonably' well at university (hey, law is hard!) and I have a lovely boyfriend and we're moving in together in July.
If your illness is taking over your life, and you feel like it's never going to get better - it will. I've learned not to let things get the better of me, and I'm very inspired by my parents to work hard no matter what. My Mum especially inspires me - she has a really senior job whilst being a mother to poorly old me and my 17 year old, severely-autistic brother. It gets better and there is help out there for those who struggle with their studies. If you're diagnosed, you're entitled to all sorts of help and no one is allowed to discriminate against you because of your illness. You are smart, you are good and you can be very important.
Part 2 of this month's blog will follow next week and will feature Jade's experiences of studying whilst living with lupus.
Is feeling overwhelmed and struggling to cope day to day part of lupus/polymyositis or likely to subside over time?
