‘I can only hope that a flare-up won’t kill me one day’: Living with Lupus at uni

It feels like you’ve been hit by a train

@global architecture chronic illness disability lupus university university of east london

It's difficult to explain what Lupus is. It's a feeling so hard to define, only others who suffer with it will ever be able to understand.

Imagine waking up after a heavy night out with a severe hangover and also finding that they had developed swine flu overnight with an added measure of migraine, and being hit by a train. If you can imagine that, then you're half way to understanding.

Last year I threw myself into one of the biggest adventures and challenges of my life – I went to university. For most people this is a natural progression from A-Levels, but for me, aged 24, my time after school was both harrowing and enlightening after being diagnosed with Lupus in 2007.

Lupus is a condition in which my immune system attacks the body instead of defending it against illness and infection. It causes a many symptoms, the most prevalent being fatigue and pain, but it can cause damage to organs including the kidneys, heart, lungs, and brain.

At UCLH whilst giving blood for lupus research

At UCLH whilst giving blood for lupus research

I was diagnosed at the age of 15, just before I did my GCSEs and was under the care of Great Ormond Street Hospital. At the time of diagnosis my symptoms were not severe and I was able to live a relatively "normal" life, but three years ago, I hit rock bottom.

I was suffering with severe depression, which is a symptom of Lupus, and finding it harder to do everyday tasks I could do before. The doctors forced me to stay at home, to start a long road to 'recovery.' Yet Lupus is incurable, and very hard to treat. But if you get the right care, treatment plan, rest, and support it can be kept under control.

So, began the worst two years of my life.

During a flare-up at uni, with swollen eyes and a rash on my legs

During a flare-up at uni, with swollen eyes and a rash on my legs

Every step I took sent agony through my feet. And my energy (what little there was), was drained before I even had a chance to get out of the front door. During my time at home, I learned different crafts, trying my hand at any and every Pinterest idea out there, which led me to a love of Interior Design.

On a complete whim, when I was finally able to live an independent life again, I decided to apply to uni to study Interior Design. I was given an unconditional offer to start a foundation year in Design at the University of East London with the intention of continuing to a full degree in Interior Design. I moved in to halls ready for Freshers' week and yearning to learn and meet all kinds of new people.

When I saw my time table however, I felt a chill of fear run down my spine. Three and a half days of studying a week, every week, seemed like setting myself up for failure. Yet I didn’t want to miss out and didn't want Lupus to affect my studies. Having come this far and having had to fight so hard to get to uni, there wasn’t the slightest chance I was going to let myself do anything less than the best, and unwittingly put both my mental and physical health under more pressure than necessary.

Luckily for me, my tutors were beyond supportive and allowed me to do half days instead of full days, on the understanding that I kept them updated and didn’t fall behind on my work. However, the university disability team told me that I needed to drop out, which was incredibly upsetting. I took a week off to go home and recuperate. When I returned, my tutor urged me to continue and reaffirmed his support for me.

For the most part, I found that cutting my hours in the studio down to half days was successful at keeping my symptoms at bay, however that didn't mean that I no longer had those days when I would wake up with that distinct feeling that you only get with Lupus.

I'm lucky I have amazing friends, who support me, give me a shoulder to cry on, and keep me going when I want to cave in. They are the ones who sit through the night with me when I am ill, and come to A&E with me when I'm having chest pains.

They're always the ones to elbow their way on to the underground or stand in front of an empty seat for me to make sure I was able to sit down. In London this is a constant battle because no one believes the girl who looks perfectly healthy should need to be offered a seat, even if I am wearing a ‘Please Offer Me a Seat’ TFL badge.

Throwing the L-Hand sign for Lupus after my sponsored skydive

Throwing the L-Hand sign for Lupus after my sponsored skydive

I find that the fatigue is the hardest thing for others to understand. It's not the same as feeling tired at the end of a long work day in any way. In fact my flatmate asked me about it recently, she explained how she feels relief when she gets home and collapses on to the bed and wanted to know if I was able to get that same relief, which of course I cannot.

Persevering and pacing are the two most important lessons to take away from living with Lupus. Life will always be one step forward and two steps back, but at least I’ll be further along the road than I was a year ago.

Even then I’ll have times in my life where it begins impossible to live as others do, I know those times will pass. I can only live in hope that I don’t have a flare up which will one day kill me, but there’s no way to ever know that and there’s no reason to live in that kind of fear.