I Didn't Feel Well, So I Watched Some Netflix

Hey there,

Yesterday, I didn't feel well so I decided to veg out and watch some Netflix. I flipped through the drama section and came across a title I had never noticed. It was called Brain on Fire. First off, if you plan on watching it - stop reading now - I will ruin the big reveal for you. Second, about 20 minutes into the movie, I "diagnosed" the poor girl who had doctors baffled in 2009.

Based on the memoir by Susannah Cahalan, the Netflix movie chronicled the terrifying month-long ordeal the then 21-year-old faced when the world had simply thought she had gone mad.

Susannah had everything a fresh young lady should need in life: a budding career, a NYC apartment, a really nice musician boyfriend, and a fun social life. But on her birthday, things started to quickly go downhill for her mentally. First, her mind started to feel fuzzy and she felt like she had the flu. Then she started seeing and hearing things. Seizures, mania, emotional highs and lows took over her body. Her doctor explained it away as too much partying until her parents stepped in and demanded real answers. She was hospitalized and eventually became catatonic. All tests came back negative and she was labeled as having psychosis, bi-polar disorder, and/or schizophrenia. The hospital staff wanted to move her to a psychiatric hospital but once again her parents pushed back. In the movie, neurologist Souhel Najjar vowed to save her and after some cognitive assessments and a brain biopsy, Najjar diagnosed her with the neurological disease: anti-NMDA-receptor autoimmune encephalitis. There's a lot to it but in short, Susannah's immune system didn't recognize her brain as friendly and attacked it (like it would a virus or invading bacteria) causing severe inflammation and brain swelling. This autoimmune disorder is not only agonizing but can also be deadly.

The Signs Pointed the Way

So how did I know what was going on with her? The moment she said she had the flu and things seemed fuzzy, I knew. I'm not some amazing medical doctor. The story just seemed so familiar to me because there are some elements of it that I've been reliving over and over since 2004. When excruciating flu-like pain riddled my body, my mom took me to the emergency room. Tests upon tests upon tests revealed little but a hard dose of steroids seemed to help the pain. It wasn't until the attending took me on as a special case because he found a personal interest in figuring out what was going on. Dr. David Watkins in Henderson, KY, pored over my tests and finally diagnosed me with Hashimoto's disease. (Immune system attacking my thyroid). He referred me to a rheumatologist who then diagnosed me with Lupus. I never quite felt like the Lupus diagnoses fit and so when I changed doctors, I wasn't surprised that my diagnoses changed to Sharp's Syndrome or mixed connective tissue disease. According to the National Library of Medicine, "Typical symptoms are Raynaud's syndrome, swollen hands and fingers, polyarthritis or polyarthralgia, myositis, skin lesions, decreased pulmonary diffusing capacity, diminished esophageal motility, lymphadenopathy, and polyserositis." Basically, my immune system attacks lots of different things (thankfully, NOT my brain) for no particular reason at all. And it all hurts. The treatment is medication that stifles your immune system so when you get sick, it's kind of a big deal.

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Since 2004, my immune system has taken aim at an ovary, hair follicles (right up front in my hair line - that was weird and embarrassing), eyeballs, muscles, and most recently all the skin all over my body. And there have been instances of mysterious illnesses plaguing me such as rubella (yes I was vaccinated), uveitis, and reoccurring chicken pox. I had the freaking chicken pox for a month and a half. THE CHICKEN POX. I had to see six doctors and two ER visits to get a diagnoses for chicken pox. CHICKEN POX.

When I said that I didn't feel well yesterday it's because last Friday I was diagnosed with a bladder infection that had moved into my kidney. Easy fix - antibiotics. But my immune system went crazy and caused a pretty nasty flare. An autoimmune flare-up is basically your immune system doubling down on the enemy (you) and your symptoms become intensified. Cue the steroids.

Why Am I Telling You All This?

Okay, so the standard of a good "blogger" is to keep things short and sweet. So, why am I telling you my entire medical history?

If you are reading this you might have a vested interest in autoimmune disorders.

Autoimmune disorders aren't something you hear much about even though about 24-50 million Americans suffer from one or more of the over 80 autoimmune disorders that have been discovered.

I'm telling you all this because I want you to know that if you have been diagnosed, you are not alone. And I want you to know that if you are not diagnosed but have a lingering medical issue that no one can explain - DO NOT GIVE UP. Keep pushing. It can take several visits to multiple doctors over weeks, months, even years to get a correct diagnoses. Symptoms can seem vague and general but it's important that you keep pressing to find answers. Even if it's not autoimmune, you still deserve to know.  You must be your own medical advocate. And once you are diagnosed, the work doesn't stop there. I spend so much time trying to stay healthy by eating right, exercising, resting when needed, drinking water, and reducing my stress. (HA! Working on that...)  The sad reality is, there's no end in sight even with a diagnoses. When I ask my rheumatologist what's on the front for a cure - his answer is always the same. No cure, just treatment.

Autoimmune disorders are on the rise and they strike women at rate of 3 times higher than men.  There are many theories as to why faulty immune systems are being diagnosed at a staggering rate such as the overuse of antibiotics, hereditary, and environmental factors. And sometimes, the worst part is that except for a few AI disorders that are visible on the skin - you look like a totally normal, healthy person to the world and should act as such. In the movie, Susannah's co-workers and boss treated her like she was being a crap employee though something was definitely wrong. I have worked at my job for 10 years and only recently I opened up to a longtime co-worker about my issues. He said, "Wow, I had no idea. You seem healthy to me." And unless some movie guru is reading this and says, I want to make a movie about this girl's month-long chicken pox ordeal like Brain on Fire, most people will never know. But I deal with the pain the disorder causes every single day. And I'm honest with my bosses about my condition - they are supportive when I'm not myself or have extra doctors appointments to attend.

According to the U.S. Department of Health & Human Services (HHS), these diseases represent the fourth largest cause of disability among women in the United States and are the eighth leading cause of death for women between the ages of 15 and 64. -nationalstemcellfoundation.org

Since the movie, Susannah has become a best-selling author, journalist, and public speaker. She lectures about mental healthcare around the world. I can't tell you if her parents played a vital role in her diagnoses because sometimes movies change up real details to make things more interesting. But I can tell you that I have been told many times... "We don't know what's wrong with you or how to treat you." But I keep pushing. I keep looking for answers. I keep searching out the really good doctors. And I keep taking care of myself, even when I feel like giving up. You can too.

Goosebumps and other bodily reactions, explained