“I felt like I disappeared. Tired – like I wasn’t alive.”

Tonight I watched a movie on Netflix called ‘Brain on Fire,’ which is a movie based on a true story. A story that was written as a memoir by the girl herself.

Now, don’t get the wrong idea – this is not a movie review. This is about finding something that both terrified and intrigued me… Worse than that, something that made sense to me.

This is a movie about that fine line between a psychological and physiological disease. About doctors seeing a young patient, using the all-too-common line of “it’s all in their head,” and assuming it’s stress related, assuming it’s a mental health condition. Because young people never get sick, right? Because it’s normal to have seizures, right?

I have lost a lot from my own illness. The main one being that I lost who I was as a person – the energetic and bubbly woman in her late 20’s, living life while always assuming there was a tomorrow to live it again.

“I felt like I disappeared. Tired – like I wasn’t alive.”

Now, I’ve never experienced something so extreme like in this movie, not even close. In fact, aside from the chronic migraines, my brain is not an issue. But I think I can speak for a lot of people with chronic illnesses when I say that in that simple description was a sum of all our feelings about our illnesses.

“The tests are showing us that she is a healthy young woman.” Ha – we’ve all heard that before, right?

“I thought of all people, you doctors would be able to give us some hope. I mean, that’s your job, right?”

I couldn’t have said it better myself. However, doctors aren’t gods. They’re human beings, just like the rest of us. But, as human beings just like the rest of us, I’d expect a little more compassion when simple test results say one thing and that person sitting right in front of them is saying another.

All you need is one person, one doctor, that believes in you and sees through the test results, sees the true illness and beyond – to the person you were and can be again someday if they can find that answer and treat it.

The conclusion – the girl was suffering an autoimmune disease that targets her brain receptors called Anti-NMDA-Receptor Encephalitis. One doctor found it, by looking closer. By finding her.

“I’m the lucky one, because in a system that’s designed to lose people like me, thanks to that doctor, I was found. He found me.”

This was a powerful story to watch play out. One that truly touched me more than any movie ever has. Not in the way you blubber like a baby when a chick flick has a happy ending, but in a way that told me that movie had touched my soul – that I felt a little spark of hope that I haven’t felt in a long time.

I see myself as a burden, I truly do. But when I watched her friends and family, how they never gave up on her, I saw the truth. I saw how I would act if someone I loved was in that position, or in my position, and for the first time I truly saw and appreciated the people who have stuck my my side through it all.

I watched a story with similarities to my own from a different perspective. And many people without illnesses would benefit just as much, if in a different way, by watching the same story.

10 thoughts on ““I felt like I disappeared. Tired – like I wasn’t alive.””

  1. Thank you for sharing, will check it out. I did 4 ketamine infusions last week for my mystery widespread pain and fatigue, it was fascinating and I feel different in a good way. Stay strong Laura, don’t give up πŸ™‚


      1. It comes and goes. I have had some emotional trauma losing my son and husband so that has made matters a lot worse. Overall, I manage but saying β€œI’m fine” is so much easier!


      2. Oh I am truly sorry to hear that you’ve had to suffer such loss! πŸ˜”
        You’re a warrior and a survivor, that’s for sure!
        Please don’t feel like you always have to be ‘fine’. People do care, more than we realise. Sometimes honesty will get us the compassion we sometimes need. πŸ’™


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