By K W Warburton, The Reluctant Spoonie
* Contains Spoilers*
Like many people with a chronic illness, I recently watched the Netflix adaptation of Brain on Fire. It is based on the memoir, Brain on Fire: My Month of Madness by Susannah Cahalan and follows Susannah’s journey to a diagnosis of the rare illness, anti-NMDA receptor encephalitis.
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Watching this film, I saw many parallels between my own diagnosis journey and Susannah’s. My illness also started suddenly when I was in my early twenties. My symptoms were also wrongly attributed to drug and alcohol use. I was also wrongly diagnosed with a mental illness. This is where our similarities end. In the film, Susannah gets her diagnosis within a month and was back to work in less than a year. I had to wait 18 months for my own diagnosis and then a further 18 months to find an appropriate treatment. Susannah had doctors who were willing to think outside the box in order to help her. Unfortunately, I have never been that lucky.
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This film also highlights the struggle of receiving adequate healthcare as a young woman. In the beginning, her doctor was quick to attribute her symptoms to drug and alcohol use because of her age. She was declared healthy when all of her test results came back negative when clearly the opposite was true. She was also wrongly diagnosed with a mental illness which happens more likely to happen if you are a woman.
Susannah’s path to diagnosis was short due to her supportive family and quality doctors. Unfortunately, this is not the case for everyone. If she had been living in a different county or didn’t have health insurance, the ending of her story would have been very different. This film also highlights the fact that if you aren’t happy with an initial diagnosis, then you have every right to question it.
I hope that this film raises awareness of anti-NMDA receptor encephalitis and also the struggle of being young and sick. I have just added the book to my reading list and can’t wait to read it to get a greater insight into Susannah’s story.
I wouldn’t take the terrible experience back for anything in the world. Too much light has come out of my darkness.
– Suzannah Cahalan, Brain on Fire: My Month Of Madness