Hi everyone. The first part of this month's blog has been written by Beth. She has shared her experiences of studying whilst living with lupus. Thank you so much Beth for taking the time to write your story for us.
In August 2013 I discovered that I had been accepted into university, I was going to start my first year studying Film & Television, and American studies. I was so excited for this opportunity, however, I didn’t realise that I had lupus at the time, nor did I realise that it was going to get worse as I took a very big step in my life.
September came and I moved out of my parents’ house for the first time. I wanted to be well so that everything would run smoothly in this new chapter in my life and that I would settle in well, knowing that I was three hours away from home and my family weren’t there to help me. The first week was a nightmare, I had never felt pain like this before, I was unable to move, my joints were so swollen in my first week of lectures I missed my whole first week of university, I couldn’t leave my flat. I spent two months through September to October missing lectures weekly for fatigue (I still do now) and the inability to walk, before I was finally referred to a rheumatologist and in November diagnosed with lupus (SLE).
Despite being on medication I still struggle with lupus, and it has had a big effect on my education. Sometimes I’m physically incapable of getting to university: the university is a 20 minute walk away, uphill, and on a bad day I simply can’t walk it. A taxi to the university costs around £4 each way and the buses have proven unreliable, or you cannot get sat down. If I have a flare up and I walk, I must set off an hour earlier to make it to my lecture on time, by this point I am exhausted and struggle to concentrate for the severe strain I’ve put on my body. I am incredibly grateful for email. While the university have an attendance rule, as long as I study from home and explain to my tutors that I’m unable to attend they understand.
I have found that I struggle to type most days, and I cannot hold a pen to write: Taking notes in lectures is vital, I need to be able to understand the information on the lecture slides that my tutors are verbally expanding on and I went through weeks trying to write notes in my classes and being unable to keep up with the fast pace of note taking. This resulted in me feeling like I was falling behind the rest of the class because I wasn’t taking down much information as I could. I had a meeting with the university’s Student Support Workers after my diagnosis and they gave me incredible support, for each lecture I now have a support worker who sits through my lectures writing notes for me. This really helps me keep on top of studying. I attend the lectures as normal and after the lecture the notes are typed up for me and sent to my email account. I have also been granted a disability allowance from Student Finance England which allows me access to money to buy equipment such as voice recognition software so that I can speak rather than type up essays and a Dictaphone, to record lectures for later referencing.
A huge part of university life is filling up a bibliography by reading sources in library books, I find it incredibly difficult as I can’t always keep the books open, or even hold the books some days. Luckily there is a lot of access to electronic resources and e-books, and the library have given me a one week extension on any of the library books that I reserve to give me chance to look at the books at my own pace.
As this was my first year at university, I was moving away from the people that I knew, the friends that I had. It was awkward to make friends; people I would meet would invite me out to things and I couldn’t attend at all, or for long, as I was so tired all the time, or I was in so much pain and it was hard to explain to people, as I myself didn’t know at this point what was happening to my body. The lupus rash looked ugly; people would stare at it and I felt too uncomfortable to be around them. It made me incredibly paranoid. Luckily, I have overcome the insecurity and I have good friends that understand my illness and bring events to me if I can’t go to them.
The biggest concern I had with lupus affecting my education was trying to keep up with deadlines. Each essay we are assigned has so far been a maximum of 2,000 words, which while it doesn’t seem a lot, it is a lot of writing for someone that most days can’t use her hands to change the channel on a TV remote. Everything is electronically entered, and while that made it easier for me in respect of typing, I was still incredibly slow at doing so. I had a meeting with a lecturer once whose essay was due in and I burst into tears “I can’t do it, my essay won’t be in on time, it hurts just too much to type” I was promptly talked through the availability of deadline extensions, due to my circumstances, and have been granted three week extensions on each piece of individual coursework that I must do in order to pass my course. This takes so much stress away. I now know that if lupus is giving me a bad day, relax, take that day off to recover; I have other days to focus on it.
My diagnosis has made things easier, though. The university have put things in place to help me when I’m unwell, and this makes life much easier for me. I relax much more knowing that I have support services in place, and I am managing to achieve good grades. I don’t think I would have continued into my second year of university, or furthered my education ever again, while struggling to deal with lupus without these measures in place; it was hugely difficult and very upsetting that I felt limited in what I could and could not do. This has just proved to me that things can be done to help people like myself, it isn’t impossible any more to achieve what I want to and my lupus flare ups have reduced massively thanks to the measures that allow me to relax more about my education - I don’t feel constantly on edge.
Part 2 of this month's blog will follow in the next few days and will feature Stephanie's experiences of studying whilst living with lupus.
Yes please, if you could contact her or ask her to contact me so we can get her permission to repost, that would be fantastic. My email: leilah@healthunlocked.com
Mycophenolate Mofetil experience with lupus nephritis.
