Four years ago, Lucy Dawson was a student at the University of Leicester, studying criminology, with dreams of joining the police force.
Out of the blue she suffered two manic episodes and her behaviour became increasingly erratic.
Her parents rushed to help and she was admitted to hospital and sectioned under the mental health act.
She spent three months on a psychiatric ward and was suffering from huge seizues, including one where she fell out of bed and burned her leg on a radiator, which means she now has to use a cane or crutch to walk.
However, Lucy did not actually have a psychiatric condition – instead, she was suffering from a rare brain disease called encephalitis, which occurs when the brain becomes swollen, often due to an infection.
Now 25, Lucy has worked hard on her recovery, managed to graduate from university with a 2:1 and has gone on to become a model.
Lucy, of Lincoln, Lincs, said: ‘Considering how absolutely horrific everything was, and how I really, really thought I was done, I don’t know how this has happened.
‘My parents thought they’d lost me – literally they were told I was going to die.
‘Now I live by myself, I’m self employed, I still have to pinch myself.
‘It hasn’t only been a physical and neurological journey, but the psychological trauma was so hard.
‘There were days where I would just wish my life away and cry every single day.
‘I have a vivid memory of reading about a 21-year-old dying of encephalitis on Facebook, and that was the moment I changed.
‘I thought that these people would do anything to have a voice, their families would do anything to have that person back.
‘You can’t spend another second wishing that your life was different, or wishing that you hadn’t woken up, because they would so desperately trade places with you.’
Lucy was enjoying her third year of university when she started having intense migraines and felt depressed, spending a lot of time in bed.
‘My friends said it was like I had had a complete character change,’ she remembered.
Then, out of the blue Lucy had two manic episodes.
She tore her room apart, began laughing and crying manically, and screaming about how she would never get a boyfriend.
Her parents rushed to help her, and she was taken to Lincoln County Hospital where she was sectioned.
On the way, Lucy had tried to jump out of their car while moving, and ripped out all of the curtains in the hospital waiting area.
She was placed in the psychiatric unit, and was there for three months until she was correctly diagnosed with encephalitis.
‘The whole time, they followed this narrative that I was having a mental breakdown,’ she said.
‘So throughout those three months, every single day, my behavior got worse until I was unrecognisable.
‘Slowly bit by bit parts of my body started shutting down.
‘I could speak less and less every single day. I made no sense.
‘Eventually, I became catatonic – so just couldn’t move at all.’
Doctors decided to try electroconvulsive therapy – which is rarely used by the NHS anymore – to blast small currents through her brain.
‘That’s not a treatment for what I actually had,’ Lucy said.
‘But somehow, this was a complete miracle, it sort of reset my brain.’
She was moved back into a hospital bed, but she kept having huge seizures.
One time, she says she had such a violent seizure she fell out of bed and burned herself on a radiator, leaving a huge mark on her left bum cheek.
Lucy was released from hospital at Christmas, but couldn’t walk and had to use a wheelchair to get around. She couldn’t move her leg and spent most of the day sleeping.
After Christmas, her family continued to push for treatment and she was finally diagnosed with encephalitis in January – three months after initially being admitted to hospital.
Doctors thought her mobility issues were due to the brain illness but a locum doctor realised the burn mark was on her sciatic nerve, making it difficult for her to move her leg.
Slowly, over time, with the care and support of her family, Lucy recovered, and even managed to graduate from university.
‘The first day I went to campus and I started crying – I just felt so overwhelmed.
‘The year leading up to it, I’d hardly left my house really, especially not by myself,’ Lucy explained.
‘I was sort of petrified to be anywhere by myself and also the implications of having a brain injury – with lights and sounds – can be very overwhelming.’
She gained a 2:1, the same grade she had been predicted previously.
Lucy also began sharing her story through a blog, and met dozens of other people in similar situations to her.
‘I became aware of how horrendously misdiagnosed the condition is,’ Lucy said.
‘That’s why it’s so important to me to speak up about it.’
She was signed by Zebedee – a model management agency specialising in working with disabled people – and is now a full-time model for major brands.
Lucy said: ‘I think there is a general ignorance to the fact that there’s a lack of disabled representation.
‘Go on your favourite brands on Instagram, scroll down and see if you see a disabled person on their page.
‘The answer more times than not is no.
‘Disabled people buy clothes, disabled people buy makeup, and I know that girls always tag the brands they’re wearing.
‘All it would take is for these brands to go on the tagged photos, and instead of reposting the same girls all the time, post a disabled person.
‘When they don’t, it’s a bit of a kick in the face.’
Lucy has also started her own social media campaign showing disabled people being sexy.
James Taylor, from disability equality charity Scope, added: ‘Disabled people are often overlooked by the fashion industry.
‘When disabled people don’t see themselves represented, then talent and potential goes unrecognised and negative attitudes and stigma go unchallenged.
‘The media has a huge responsibility and power to influence the public.
‘We want to see more disabled people represented in modelling and across the media as a whole.’
Dr Ananta Dave, medical director at Lincolnshire Partnership NHS Foundation Trust, said: ‘We are truly sorry for any care that fell below our expected standards and the impact this has had on Lucy and her family.
‘We are committed to delivering high quality, safe patient care and have a robust internal investigation process in place to learn lessons for the future.’
For more information on encephalitis visit the Encephalitis Society’s website.
You can follow Lucy on Instagram.
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