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ā€˜Friendly fireā€™ in my brain led to me being wrongly sectioned

Lucy Dawson on how ā€œfriendly fireā€ from her immune system led to her becoming disabled.

Model Lucy Dawson was just 21 when she was wrongly sectioned for three months.
Doctors believed she was experiencing a mental health breakdown, but she later learned she had encephalitis ā€“ a rare but serious condition in which the immune system mistakenly attacks the brain in a situation called ā€œfriendly fireā€.
While in hospital, an accident on the psychiatric ward led Lucy to become permanently disabled.
"At one point I really thought my life was over, I was so depressed," she says. "But somehow I managed to turn it around - I was so unlucky, but at the same time I'm so lucky to have persevered."
Now a successful model and disability advocate, Lucy talks about her time in hospital, why she likes to make sure her mobility aids are pictured on lingerie shoots, and how she deals with online trolls.

Presented and produced by Keiligh Baker.

If youā€™d like to get in contact with the team, email ouch@bbc.co.uk.

You can hear our latest podcast by saying ā€œAsk the Ā鶹Ō¼ÅÄ for Ouchā€ to your smart speaker, plus you can listen and subscribe on the Ā鶹Ō¼ÅÄ Sounds app.

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28 minutes

Transcript

Ģż

JINGLE -

Ā鶹Ō¼ÅÄ Sounds: music, radio, podcasts

KEILIGH -

Hello and welcome to the Ā鶹Ō¼ÅÄ Ouch podcast. Iā€™m Keiligh Baker and this week we have a rather special guest, model, activist, Instagram sensation and encephalitis survivor, Lucy Dawson. Lucy was just a regular healthy student when she became severely ill with a serious and life-threatening condition, but she was misdiagnosed and told she was having a mental breakdown. She was then wrongly sectioned to a psychiatric ward for three months, where an accident led her to becoming permanently disabled at 21. After a long recovery, which included learning to walk and talk again, Lucy not only managed to finish her degree she is now a successful model and disability advocate.

Lucy, thank you so much for joining me today. Your story is quite extraordinary, especially considering how young you are.

LUCY -

Yeah, I agree. Even just hearing your introduction Iā€™m like oh yeah, that was me, that actually happened. [Laughs]

KEILIGH -

So, letā€™s start right at the beginning. You were in your final year at university when you first became ill, is that right?

LUCY -

Yeah, I was two weeks into my first term of third year. And I can remember going to fresherā€™s events and everything being completely normal. And then everything goes a bit hazy after that.

KEILIGH -

How did you first start showing symptoms that you were perhaps werenā€™t very well?

LUCY -

So, I lived with my two best friends, and I can remember suddenly being really sad all the time, crying all the time. I can picture myself lying on my friendā€™s bed just in floods of tears about nothing really. And they tell me that I was crying about things like that I was going to fail my degree and that I didnā€™t have a boyfriend and all things that had never bothered or affected me before. I can remember trying to walk into university and feeling like I was really, really faint or really drunk or something. So, I donā€™t really know how I was crossing roads and things on reflection. And I can remember being in lectures and just constantly falling asleep.

Ģż

And then one morning my best friend found me screaming her name at 6am, just her name over and over again, like I couldnā€™t say anything else. And she rang my mum and my mum said, ā€œyou need to take her to hospitalā€. So, an ambulance came and that day I was in the hospital for about half an hour and they said, ā€œoh sheā€™s just having a panic attack, sheā€™s stressed out about universityā€, and sent me home with some breathing exercises. And by the end of the day I rang my mum and my sister and I apologised, and I said, ā€œsorry, Iā€™ve just been really worked upā€, and it was as though I was okay again.

And then the next morning the same thing happened but about a million times worse. So, when my housemate, Becks, came in my room Iā€™d absolutely torn it to pieces and I was sat in the middle of the floor with all my belongings around me just rocking backwards and forwards, and she said my eyes were absolutely wild. Again she rang my mum, and this time my mum and dad were so worried that they drove from Lincolnshire to Leicester that morning, and when they go there they were really horrified by what they saw. Straightaway they asked my two housemates, ā€œhas she taken anything or is there a possibility that sheā€™s been spiked?ā€ They say my housemates down and my housemates were like, ā€œabsolutely not, no chanceā€. And so they put me in the car and I was absolutely manic, like manically giggling one second and then just repeating words that made no sense. And once the car was going down the motorway I tried to get out of the car, tried to escape. So, my mum and dad were obviously frantically trying to get me in somewhere.

Ģż

They managed to get me into a hospital. Again in the waiting room my mum had to actually sit on top of me to restrain me because I was really, really wild. I think Iā€™d ripped curtains down from the hospital. So, when the doctors saw me they said ā€œthereā€™s something seriously wrong with herā€, and my mum and dad were like, ā€œreally? You donā€™t say!ā€ And basically they sectioned me straightaway under the Mental Health Act and basically said, ā€œsheā€™s had a mental breakdownā€. Obviously I hadnā€™t had a mental breakdown, and the story that was painted it was like clutching at straws, but because I couldnā€™t speak for myself they ran with that because my mum and dad arenā€™t doctors, and they were told go find out why sheā€™s had a mental breakdown; and this was the only storyline they could go with, if that makes sense.

KEILIGH -

Do you remember all of this or is this just what everyoneā€™s told you afterwards?

LUCY -

The lead up to me being ill I have these awful flashbacks of being in my bed and every time I closed my eyes, every time I fell asleep I thought I was being chased in a forest. I had this really vivid memory of running, being chased from something and kept falling over, tripping and falling over. And I would wake up and I would reach out to grab my phone and the second I touched my phone or the second I touched my laptop they would vanish, they would disappear; these were like these really strange hallucinations I was having. Because part of the disease that I had you have hallucinations.

Ģż

The summer before this I was having migraines every single day, but not just migraines, migraines that nearly paralysed one side of my body and they would make me sick. But I thought oh, itā€™s because youā€™re not drinking enough water oh, I used to be menstrual migraines, I thought oh itā€™s to do with the time of the month, or oh itā€™s because the weatherā€™s so hot, you havenā€™t slept enough. I kept putting it off as being something else. But obviously on reflection that probably had something to do with it.

Ģż

The time in hospital itself, which Iā€™ll get onto, I have memories and flashbacks of different moments in hospital. But because of the nature of the disease I will never know which of those actually happened and which of them were hallucinations. So, for example the very first, well I believe it was the first night, I think that one of the other girls in the ward hit me because I got in her bed by mistake. There are medical records that I had bruises on me the next day. But I still couldnā€™t tell you for certain if that happened or if I imagined it.Ģż

KEILIGH -

That just must be so terrifying for you knowing that youā€™ll never actually know which of it was real and which of it wasnā€™t.

LUCY -

Yeah.

KEILIGH -

It does sound like someoneā€™s nightmare.

LUCY -

Yeah, it was really. And then because I was in the hospital for three months so thereā€™s definitely weeks at a time where I have absolutely no clue what was happening, like I could not tell you a second of it. But I do have these memories of consciousness here and there where I remember bits and pieces.

KEILIGH -

And this whole time you were in a psychiatric ward, is that right?

LUCY -

Yes, I was in the womenā€™s ward, so there were probably about 20 other girls in there; I was the youngest. And I donā€™t mean this to sound in any way nasty, because itā€™s none of their fault, but being not mentally ill in a ward of mentally ill people who had very severe and varying conditions that in itself is very traumatising. The things that I witnessed I should never have had to have seen.

KEILIGH -

Can you tell me a little bit about how you got your leg injury?

LUCY -

Itā€™s worth reiterating that I didnā€™t have a mental breakdown; I had a brain disease, a rare brain disease named anti-NDMA receptor autoimmune encephalitis, which is inflammation of the brain which results from the immune system attacking itself. Itā€™s called friendly fire, so the brain thinks that itā€™s attacking bad cells but really itā€™s just attacking itself. And this stops all your autoimmune processes, so blinking, breathing, swallowing, everything slowly turns off and goes. But first it really changes your behaviour completely; it sort of makes you a completely different person.

Ģż

The first month or so that I was in there, like I say, I was completely wild, I was really aggressive to the nurses and to my family, swearing at them all the time and completely a different person to anyone who I had ever been. But as well as being aggressive it made me very childlike, like a toddler in an adultā€™s body. That sort of peaked as an absolute high of bizarre behaviour, and then just suddenly dropped off and presented as my body shutting down. So, slowly I became catatonic, which is where youā€™re in a rigid stupor and you canā€™t feel your own body. And that was when I sort of became slowly, slowly more vegetative.

So, my 21st birthday was 18th November that year, and this all started mid-October, and by my 21st birthday the doctors said to my mum and dad, at this point Iā€™d been pumped with all psychotic drugs and everything for this fictional mental breakdown, they said, ā€œsheā€™s dying, sheā€™s going to die and we donā€™t know why, and weā€™re running out of things to do now, so as a last ditch attempt to save her we can give her ECTā€. Which is electroconvulsive therapy, which isnā€™t something which is really used very often anymore; itā€™s shocks to the brain. I have no recollection of it and Iā€™ve never researched what it is. But itā€™s a really prehistoric treatment. So, on my 21st birthday I had three rounds of ECT. This is not a treatment for encephalitis by any means, but by some miracle it triggered tonic chronic seizures in my brain. And again, this would never usually happen, and I donā€™t know if it was because of my age or because I was relatively healthy and everything, but for some reason these seizures sort of shook my brain into resetting. So, they put me back on my ward bed. And this would be a great time for the story to end, and had it ended here I would have an acquired brain injury, which would still be absolutely awful and traumatic, but it would have been natureā€™s way, it would have been like any other illness. But unfortunately they put me back on the ward bed and I had such a big seizure, and they left me alone, and there were four pillows underneath my head and the sides of the bed were non-existent, so I had such a big seizure that I fell over the side of the bed and next to me was an open radiator pipe, and like I said it was the end of November so this pipe was as hot as it would ever be, I was catatonic, couldnā€™t feel my body, so I just laid on the pipe burning away. I believe I was on an oncology ward at that point, Iā€™d been wheeled into one of those, so there were a few elderly cancer patients on the ward, and one of them eventually screamed for help. I have no recollection of that.ĢżĢż

Ģż

But the next part of the story I know from my parents. My dad came to visit me when I was just slowly starting coming round from the ECT, and he said as soon as I gained a little bit of consciousness I was absolutely screaming in pain, crying out in pain, but nobody really said why. And at that point my behaviour had been so erratic and strange that it just sort of fit in that it was another thing that I was doing. But he told my mum that Iā€™d had a little fall but nothing really more was said. So, it wasnā€™t until I was discharged from hospital and they gave my mum some dressings and some cream and said, ā€œoh sheā€™s got a little burnā€. Well, when my mum got me home and saw the little burn it was 11cms, it was a third degree burn through the dermis and the epidermis of the skin, absolutely blistered, bloody, raw, like she was absolutely horrified. I was still so out of it. I was aware that my leg didnā€™t feel right, that it wasnā€™t working properly and that I was in a hell of a lot of pain, but I couldnā€™t really verbalise or explain because obviously, like I said, I had to learn to talk and everything again.Ģż That was explained to my parents that it was just part of the encephalitis that my body was slowly waking up. So, that was what we were told.

Ģż

I was sent home. At first I had a wheelchair and at first I had a big moonboot and all these varying splints. About a year and a half maybe later, after so many appointments with so many different types of doctors being told, oh just keep waiting, I had a chance meeting with a rehabilitation doctors, and it was a locum doctor, my regular doctor was away, and she asked me the backstory of what had happened, and I told her about the burn on my bum and everything and about my leg. She asked me to see the location of my burn, and she basically told me, ā€œthat burn is the exact place, the exact size of your sciatic nerveā€ and she told me that some peopleā€™s sciatic nerve splits a different way to other peopleā€™s, and if I was one of those people then that would explain why the bottom of my left leg was now paralysed. I managed to get that confirmed by my neurologist. And again many years later we got full admission that that was most likely what had happened.

KEILIGH -

And so at what point did the doctors say to you and your parents, ā€œoh, she hasnā€™t had a mental breakdown, it was encephalitisā€ when was that clarified?

LUCY -

So, I went into the mental health psychiatric ward in October, I was discharged in December, and then in January, I think maybe January 17th 2017 in an appointment with my neurologist that was the first time we ever heard the words encephalitis. And then again it was up to us to go and look up, well what on earth is that. Iā€™d never heard of it before; my family had never heard of it before.

KEILIGH -

And I understand that obviously it can be quite hard to pick up on, canā€™t it, but were you ever given a reason by the doctors why it took them so long to realise what was wrong?

LUCY -

No, because it is commonly misdiagnosed, which is ridiculous because all it takes to diagnose it is a blood test. But my opinion is that they see a young girl at university, first thought is sheā€™s taken drugs, second thought is, oh itā€™s a mental breakdown because general identifications of mental illness.

KEILIGH -

So, Lucy, I know that as a result of your time in hospital you now live with mobility issues, you use a splint and a walking stick, but what were the effects when you immediately got out of hospital back in early 2017?

LUCY -

I was just asleep for about 23 hours a day at first. I just wasnā€™t living any kind of life really. I didnā€™t recognise people at all. I was so confused, so exhausted, and yet I couldnā€™t really communicate anything. I couldnā€™t go upstairs. I was sleeping on my mum and dadā€™s sofa. I had to have a commode and everything because I couldnā€™t mobilise. My mum had to help me bathe every day; she had to help me get in and out of the shower. I was just stripped of any independence because of what had happened.

Ģż

It was my grandparents who, as I slowly started to become a little bit more engaged, they started trying to get me to go on these tiny little walks every day, like they would really support me, and I had crutches and I had a splint. Tiny, tiny steps at first and slowly ā€“ I mean, this was going on for about two years ā€“ so you can imagine slowly trying to build up a little bit more, a little bit more. My grandpa was a teacher when he was younger, which it was such a blessing, because basically the hospital let me go that day, I had so many appointments for so many different things, but none of them were to help me, none of them were, I say I had rehabilitation, but none of them were to help me live again, none of them were to re-educate me on life and how to speak and everything again. It was left up to us. Some people would tell me Iā€™d never walk again, some people would say give it to years, youā€™ll be absolutely fine. It was so heavy on my mental and my heart and everything, just constantly being given a little inkling of hope and then having it pulled away. It made me such an angry person. I was so nasty to my mum because I was so frustrated. It really, really just made me so depressed.

KEILIGH -

[Music] We got in touch with the Lincolnshire Partnership NHS foundation trust who told us, ā€œwe 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 futureā€.

LUCY -

Two years later I went back to university and I finished my degree. I got through it all; I still donā€™t know how I did it but I did. I was getting a 2:1 before I had a brain disease, [Laughs] I ended up getting a 2:1 overall.

KEILIGH -

And so you got your degree and then the modelling started to take off.

LUCY -

Before I was poorly I was so obsessed with make-up and being glamorous and everything, but I was so insecure because people at school werenā€™t very nice etc. So, I would always have this full face and this full look of being glamorous. So, when I came round I can remember being laid in my bed at home a few months later and looking up at my desk and seeing this box of make-up. And again it broke my heart because as Iā€™d lost all my ability to do anything that included motor skills, so blending eyeshadow and things. I would have had no idea where to start with putting on make-up, which was so sad because it was something that I always loved. And I was looking at myself in the mirror and I was disgusted. Weight isnā€™t the be all and end all, and I know that now, but when I was in hospital I was being fed through a nose tube so Iā€™d lost absolutely loads of weight because I wouldnā€™t eat anything at all. And then when I came out I was on so much medicine and not able to move at all, so I absolutely piled on so much weight. I was just looking at someone that I didnā€™t recognise. I just really, really hated myself again. And obviously I couldnā€™t do my make-up, couldnā€™t do my hair. Again itā€™s those little things that make you feel like yourself, make yourself feel good, I just couldnā€™t do.

KEILIGH -

Yeah.

LUCY -

At first Iā€™m sure my make-up looked an absolutely state [laughs] but I just kept probably watching YouTube videos and trying things out. Iā€™m by no means Charlotte Tilbury now but I try my best. [Laughter]

Ģż

So, the modelling, my agency is called Zebedee, they only represent disabled models, actors and talent, and Iā€™ve been with them about a year and a half. It started off because I had a few thousand followers on Instagram and Iā€™d found the disabled community online, and that was a huge, huge part of my journey, meeting other disabled people my age, hearing other disabled peopleā€™s stories and relating to them and having solidarity with them and everything. And Zebedee just opened my eyes again to the lack of representation of disabled people in the media and fashion. And it really resonated with me because I can remember the first time that I had my phone and would open Instagram, and you are just every day flooded with images of societyā€™s version of the perfect person. Itā€™s very rare at the time, I had not diversified my feed at all, like I donā€™t think I was following many disabled people at all before I was poorly, so to find all these amazing people who were so beautiful and so deserve a platform and so deserve representation. And again, Iā€™ve met so many amazing people through that so it has been very cool.

KEILIGH -

And obviously you do a lot of lingerie modelling and stuff like that; is that something that you were always interested in?

LUCY -

As I say I was really, really struggling with my body probably till about this time last year. I think one day we had a brief through Zebedee that was about reflections, and you could sort of interpret it however you wanted. And I took the time to reflect on everything my body had done for me, beyond looking a certain way, beyond weighing a certain amount; every cell in my body had fought to keep me alive. And I was like why am I waking up every morning and being so nasty to myself, to my own body which has saved my own life, so appreciating myself a bit more. And I started looking after myself a lot better once Iā€™d had this realisation. For this brief I decided to, it wasnā€™t like risquĆ© lingerie, I was quite covered up, and the messages I got back from it about, I love to see you looking so confident with your disability and everything, and it made me quite empowered. And then brands obviously since then have wanted to work with me and everything. And now I donā€™t feel any shame about posting in lingerie. Disabled people do wear underwear, believe it or not, but you very, very rarely see any disabled people in any, well you rarely see them in fashion campaigns, let alone lingerie campaigns. And thatā€™s something that we keep working towards and trying to increase the representation of.

Ģż

Any time that I do work with a brand and itā€™s a brand that has a lot of followers on Instagram, if they repost my picture and my mobility aids in it I just think good, because a young girl or a young boy could open their feed and see me on their page instead of the same people that they see on every page, every day of the week, and that might make them feel like yeah, if she can do it I can do it, and look at her, she looks happy, she looks confident with her mobility aid, so why canā€™t I be. And I think thatā€™s so important because I didnā€™t have that when I first became disabled.

Ģż

Society tells us all the time that we have to be a certain way, and we wonā€™t turn that narrative around until society stops telling us that. And the only way that we can make that is if we are louder than society and if we are seen, I canā€™t remember who it is that said it, but a disabled lady said, ā€œwe have to be seen to be heardā€ and I think itā€™s so true: we have to keep pushing. The same with the plus sized community, the same with any marginalised group, you have to keep pushing against the thing thatā€™s holding us back.

KEILIGH -

Definitely. And I love as well, I know that you have had a big part in the Disabled but Sexy campaign, which like you said, unless you diversify your feed youā€™re unaware that thereā€™s this whole subculture of really empowering, amazing people doing such good stuff on social media.

LUCY -

Definitely.

KEILIGH -

And youā€™re a big part of that, so that must feel amazing.

LUCY -

Someone messaged me one day saying, thanks for reminding me that disabled and sexy are not two mutually exclusive terms. And Iā€™d put the hashtag that day on Twitter, and I believe it already existed, but I didnā€™t know at the time that it already existed but Iā€™m pretty sure it already did, so I donā€™t want to take a credit for that one. [Laughter] But any time that sort of thing can come up and disabled people can share their pictures of themselves and everyone can see it I think itā€™s cool. And if it makes one person feel more confident in their disability, which it does because I know it does because I get the messages and I see the tweets, I think itā€™s awesome.

KEILIGH -

100%. I feel that leads us quite naturally onto social media. I feel that youā€™ve got a bit of a love/hate thing going on with social media. Youā€™ve got 45,000 followers on Instagram. Do people ever recognise you in real life?

LUCY -

Oh, I donā€™t go anywhere in real life. I donā€™t think I did since last year! [Laughter]

KEILIGH -

Thatā€™s true actually, isnā€™t it, true for all of us; that is actually a good point. How do you find it? How do you deal with that level of interaction with your posts and everything?

LUCY -

Like I say, any time that I can make a little wave by reposting on someoneā€™s page or getting a nice message from men and women about feeling good because theyā€™ve seen my post I absolutely love that. Of course whenever youā€™re on social media you open yourself up to negative comments. Instagram is pretty calm. I think I have 180,000 followers on TikTok and thatā€™s where the real nasties live. But Iā€™m pretty comfortable in myself that I can take it.

So, for example if someoneā€™s nasty about my looks these days, whereas before I was poorly that would have ruined my entire year, I would have dwelled on that for so long, but because Iā€™ve been through so much youā€™re able to rationalise the importance of certain comments. And thatā€™s not to say that comments about appearance online are not absolutely awful, but theyā€™re not the ones that bother me anymore. The ones that would bother me more are the ones, for example someone recently commented on one of my videos about my disability saying, you should have died, now that, thatā€™s a step too far for me. Or the ones that frustrate me, I mentioned earlier this morning, comments telling me that Iā€™m lying about my disability and things like that, I just think thatā€™s ridiculous. I donā€™t know why people are so keen to out people for faking disabilities. Iā€™m definitely not faking my disability, and I think itā€™s really rude because obviously Iā€™ve been through a hell of a lot to become disabled and I donā€™t need some random person on the internet telling me that itā€™s fake, because those years of absolute struggle were not fake.ĢżĢż

KEILIGH -

Do you have any advice for any aspiring disabled models out there who might be listing?

LUCY -

Yeah, thereā€™s no reason that you cannot be a model just because youā€™re disabled. Thatā€™s even more reason you should be a model because we need more representation; we need to be seen more. So, my advice is if you want to be in the community just go for it because you really have nothing to lose.

KEILIGH -

Well, on that note Lucy I think that youā€™re going to have really struck a chord with so many people, so thank you so much for joining us today and for sharing your story.Ģż

Ģż

[Music] Donā€™t forget to subscribe to the Ouch podcast on Ā鶹Ō¼ÅÄ Sounds where youā€™ll find hundreds more disability conversations. And you can get in touch with us by emailing ouch@bbc.co.uk or find us on Twitter and Facebook @bbcouch.

Ģż

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