‘I had no control over my body’: What it’s like to experience encephalitis at uni

Lucy Dawson was your typical third year student. She went the University of Leicester, lived with two girls in the popular student area and went on plenty of nights out. Lucy studied criminology and was looking forward to joining the police after she graduated. 

However her entire life changed after she got encephalitis, a series condition which causes inflammation of the brain. Over the course of a few weeks Lucy was misdiagnosed and placed in a mental health ward, received three rounds of electric shock therapy and ended up paralysed for life in her left leg. 

The Tab spoke to Lucy about her experience of her disease and how the repercussions of her misdiagnosis changed her life. 

During the summer before third year Lucy experienced a number of migraines, but downplayed them and tried to get on with life. Third year started and Lucy and her mates went to Freshers’ Week and prepared to begin their last year of uni. 

Lucy suddenly changed, almost overnight. Lucy had always been extremely bubbly, confident and studious. However she soon started to experience depressive symptoms. Lucy said: “I’d been having these horrendous migraines that was sort of going all the way down to my shoulder, making me sick every morning.”

Lucy locked herself away in her room and had a series of negative thoughts, like “I’m going to fail my degree”, “I’m fat, I’m ugly”, “no one likes me” and her migraines continued. Lucy recalls falling asleep in one of her lectures and found it difficult to cross the road because of hazy vision.

Most of us would probably put her experience down to  the pressures of third year taking its toll, but one morning one of Lucy’s housemates heard her screaming for her. Lucy was giggling manically and completely bewildered. Lucy does not remember any of this and can only recall it from stories told by others. She was taken into hospital, where she was told she had suffered a panic attack and was sent home with breathing exercises. 

However at 6am the next day, the same thing happened, except this time it was much worse. Lucy was shaking and rocking, she felt robotic and all she can remember was a bright light shining in her eyes. This light turned out to be her the light from her dad’s phone as he filmed what she was saying.

Her parents drove her to nearly every hospital between Leicester and her home town of Lincoln. None of the hospitals would take her because of lack of beds or being in the wrong post code. During the drive Lucy tried to escape the car and when they arrived at a hospital her mum had to sit on her to control her.

Lucy said: “I was completely erratic, my mum had to sit on top of me to restrain me because I was doing the most mad things. I pulled curtains off the walls at one point and I was just screaming oranges over and over again, like why oranges?”

Lucy was eventually admitted into hospital, where she was immediately and incorrectly sectioned under the Mental Health Act. She remained in a mental health ward for three months. 

“I remember the first night, it gets so hazy because I don’t know what I was imagining and what was real. But I remember being beaten up by one of the patients, it was terrifying really.”

During this time her parents were urged to find out why she was suffering a ‘mental breakdown’, they searched her laptop but came out with nothing apart from a loose theory about an ex. 

Lucy was in hospital on psychotic medication and her body was shutting down due to the encephalitis. Encephalitis can affect anyone and the symptoms can come on very quickly and usually start with flu-like symptoms such as headaches and high fever. The symptoms usually progress to confusion, seizures, fits, changes in personality and behaviour, difficulty speaking, loss or weakening of movement in parts of the body and loss of consciousness. 

Her immune system was attacking healthy cells, as it saw them as unhealthy. The brain is essentially attacking itself and all the good parts of it. This impacts the autonomic functions of the brain such as swallowing and breathing. Lucy also experienced catatonia causing her body to become immobile. 

Her parents were told she was dying and as a last resort the hospital would try electric shock therapy (ECT). 

And so on Lucy’s 21st birthday rather than getting drunk with her mates down at a Leicester bar, she received three rounds of electric shock therapy. 

ECT is not a treatment for encephalitis but by some miracle it worked. Lucy was only diagnosed with the autoimmune condition two months after she was discharged after having a blood test. 

This should have been the end of Lucy’s horrific ordeal.

After the third round of electric shock therapy she was placed on a ward of elderly cancer patients. She was raised up on the bed onto four pillows. The ward was left unsupervised and Lucy fell onto an open radiator pipe. Due to the effects of the encephalitis she was still immobile and unaware of her surroundings, including the extremely hot pipe she fell onto. It wasn’t until one of the patients alerted the staff that Lucy was removed off the pipe. However by then the damage was done. 

Lucy received an 11cm burn down the back of her left leg and her parents were only told when Lucy was being discharged from the hospital. 

Lucy commented: “And then when I saw it was, well, it’s 11 cm long. It was through all the layers of my skin at that point, it was completely blistered and it was just disgusting.”

Whilst Lucy was recovering at her home, her body started to wake up after the catatonia, apart from her left leg. The hospital said this was due to the encephalitis. But when Lucy visited a specialist doctor who saw her burn, Lucy was told the burn had damaged her sciatic nerve and her leg was therefore paralysed. 

Lucy should have come out of hospital with an acquired brain injury, but because of the misdiagnosis she is disabled for life.

Encephalitis affects 6,000 people in the UK a year and today, 22nd February is World Encephalitis Day.

Though Lucy has survived the traumatic brain inflammation, the repercussions are still felt in her everyday life. She had to relearn to do everything – walking, talking, everything was new to her again.

“I hadn’t been on my laptop, because I was so scared of looking at everything that I didn’t know any more. That degree, all the money that was spent on it, all the time put into it, like everything, all those years that you’ve been in education and every test you’ve revised for, now means nothing.”

Lucy also found returning to university extremely overwhelming. When she returned to uni, she ran into someone she had seminars with throughout her previous time at uni and she couldn’t remember her.

“And I cried all the way to my first lecture because I just thought, if I can’t remember that, someone who I’ve known, what else am I gonna realise that I don’t know.”

Despite all this Lucy returned back to uni to get her degree. She went back to the University of Leicester, who kept her place open and even covered her rent whilst she was in hospital. Lucy studied with attentive lecturers, who put the seminars and lectures online so she wouldn’t have to go to campus due to anxiety. She graduated this year from the University of Leicester with a 2:1 degree in Criminology. 

Now Lucy is trying to raise awareness for encephalitis as 78 per cent of the world are unaware of the disease, you can read more of Lucy’s story here.

If you want to learn more about encephalitis or donate to life changing research please visit the encephalitis society website. 

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