“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.

Unexpected Loss

All those years in school, no one really prepares you for what it’s going to be like when you have your heart broken. And I don’t mean 16 year old, “I just broke up with my boyfriend of 3 months,” kind of heartbreak. I mean the kind that leaves a profound impact on your soul. A mark that will never quite go away.

Now, my relationship wasn’t perfect. I don’t actually know why that word exists; nothing is perfect. But it was real. It was best friends who had fallen in love. It was trust, understanding, respect, support, and unconditional love… Or so I’d thought.

You never really see it coming. That humiliation you feel when the things you thought were what made your relationship indestructible, were all in your head. That utter disappointment in the person you had so carefully trusted with your heart. That rejection.

The blow to your self esteem hits the hardest. Knowing that your life situation, your very being, doesn’t tick all the boxes for that person. Knowing that the unconditional love and support you so consistently offered… Simply wasn’t enough.

It leaves you thinking… What else is there? If I gave my everything and it wasn’t enough… What then?

Unloveable. Pathetic. Those are the feelings that crush the soul and leave an inexplicable darkness in your heart that was never there before. Even through all the trials you’d overcome in life, this hits home the hardest. And now you’re trapped behind a facade of strength and rationality, all the while feeling utterly broken intside.

The worst part – you can’t even hate them. They’re not actually a bad person, they simply didn’t want you. But there are three words you can’t seem to vocalise to anyone, because the humiliation and loss is too raw.

“I miss him.” Pure. Simple. Gut wrenching. Three words that wake you up at night with a physical ache. Three words that make you want to lash out and tear your room apart.

I do. I miss him. And no one, nothing, could have prepared me for that.