My name is Elisabeth.
I am a French student and I’m 23 years old. My parents are married and I have two younger brothers.
I complain a lot. I did before it happened to me. But I am conscious that I am a lucky woman. A survivor. It has been four years since I got autoimmune encephalitis. Not a very pretty word, also complex and not understood by the majority of people, not said by the majority of people I meet.
It is, simply, an inflammation of the brain. My body created all the antibodies that are attacking my brain. And when the brain doesn’t work, nothing else works.
READ: LE RÉCIT D’ÉLISABETH (en français)
At the time, I was 19, I studied at Tours in France, and I had my apartment, a boyfriend and friends who I’d known since kindergarten. A simple life, a dream life. I did not smoke, not at all. I drank what was needed to be happy from time to time. When I was motivated, I did a bit of sport. And then, in a few weeks, my whole life was rocked.
From October to November 2014, I discovered hell. I was in good form and little by little I was caught, imprisoned in my own body.
The very first symptom was during a class. My hand that was holding my pen didn’t know what my head was thinking. I knew exactly what I wanted to write but my hand wouldn’t move. Strange.
Then the insomnia. The tremors. Loss of appetite. Losing track of time. There began to be more days when I wouldn’t go to class, and there would be several days where I hadn’t gone to class but I didn’t even realise it.
Then the hallucinations. The feeling of being smothered in my apartment. One morning, it was impossible to get up out of my chair. Impossible to walk. One afternoon, feeling locked up at home, I decided to go out into the street, I was lost, I called my boyfriend to come and find me in the middle of his class. I got lost in a street next to my apartment.
Then the mood swings, even aggressive behaviour towards my brothers. After the weeks of tumbles, I finished by going back to my parents who didn’t suspect anything. And there, the symptoms got worse and no one knew why.
And I, lost in a parallel universe, only thought of one thing: to return to Tours, to find my boyfriend and my student life. The craziest assumptions were made. From my drink being drugged in a nightclub, or it being something I had eaten, to a bewitchment! But no medical response.
In the meantime, I continued to have epileptic seizures and fits of madness. Lost in my mind. I lost the power of speech, I lost weight (at my lowest I was 37 kg at 169 cm tall). I spent weeks in a hospital bed without knowing what town I was in, nor what day it was, without moving or expressing myself.
The worst thing is suffering in hospital in silence. You want to communicate with those who come to visit you every day but you are not able to tell them that you are there, that you understand but that you can’t talk. Perhaps life is unfair, but I ask ten million times the question, why me?
I spent Christmas, New Year and my 20th birthday in hospital. They tried everything: scanners, MRIs, lumbar punctures, encephalograms, blood tests etc. All of my organs were done. But no luck, it was autoimmune; that is to say, my organs are auto-destructing for no reason. Or as of yet, ‘we have found no reason’.
Until the day I meet my guardian angel. A doctor, the doctor. The person who will magically diagnose and treat me.
And from the depths of hell, I fought: my goal was to go back to Tours in September 2015. I had several months to recover all of my functions, find my personality again, and above all my confidence in myself.
I went to a rehabilitation unit and worked hard. I completely re-learnt my name, how to tie my shoe laces, how to shower and walk down the stairs. I arrived in a wheelchair, and left in heels. I re-learnt how to write, but in the beginning I copied from typography books. I learnt the alphabet again, and how to count. I had to relax to be able to stand again. I got the chance to be accompanied by qualified professionals. I never had physical after-effects, apart from a broken tooth and a little scar.
Today, I have a diploma in marketing, I re-took my studies the year after. Currently I live in London, where I took a gap year and work as an au pair and as a waitress. I take the opportunity to travel. I can drive, even if driving on the left-hand side of the road is not for me!
In writing my story, I wanted to thank all the people who helped me in my healing. Thank you to all the medical staff who helped me, to the nurses who looked after me during the day and night. To my guardian angel. Thank you to all my friends who came to see me even when I was a vegetable. Thank you to all of my family, my parents and my grandmother, and my little brothers who played the role of big brothers through all these months. And thank you to Clément, my ‘médicament’.
I want to spread a message, a message of prevention so that this disease is better known and better treated, and a message of hope for all those who go through this ordeal. We can get by and despite this huge injustice in life, enjoy beautiful moments with the people we love.
Find out more about autoimmune encephalitis here.
