How I Was Diagnosed with PANS When I Was 19

After weeks of waiting and hoping and worrying, the time had finally come for my appointment with the mysterious expert neurologist. My parents and I arrived half an hour early to a spartan waiting room with an almost-eery quiet. A single tub of building blocks and several stuffed panda bears made me wonder if the staff really understood that they had allowed an appointment for an adult.

Forty-five minutes later, this concern was allayed when the doctor emerged to call me back without batting an eye when she saw my nineteen-year-old self. But all at once, I felt my stomach do a somersault as it occurred to me that she could be my last hope. Eight years of misdiagnoses had led here. Could this surprisingly soft-spoken woman finally be the one to help?

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Dear Sick, Scared 2015 Me… A Letter to Someone Whose Illness Uprooted Their Life

Dear 2015 me,

I know you feel like a stranger in your own life right now while you’re the sickest you’ve ever been with PANS. I know you’re scared, lonely, and unsure if there will ever be anything more to your life than this illness that attacked your brain and kidnapped you from your own body. I know you feel invisible because of all the hours you’re trapped in your room and all the days when you’re trapped in a mind you no longer recognize. You feel unseen because no one knows how much it takes for you to accomplish what others take for granted.

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Why Ignoring Adults with PANS Hurts Everybody

After twenty years in and out of group homes, psychiatric hospitals, and residential treatment centers, at twenty-nine, Jo* has never been stable enough to have a job. Jo lives with his parents between hospitalizations. Despite being incredibly smart, Jo barely finished high school due to several learning disabilities. Jo’s frequent panic attacks render him unable to drive. Jo almost died of cardiac arrest from anorexia and has attempted suicide multiple times. Continue reading “Why Ignoring Adults with PANS Hurts Everybody”

Why These Myths About Suicide Are So Harmful

[Trigger warning: this post contains discussions of personal experiences with suicidal thoughts and misconceptions. If you’re in an emergency, please call the National Suicide Lifeline at 800-273-8255 or dial 911.]

 

No one needs to know, I told myself as I sat frozen, staring at my phone. I don’t need to call him, I tried to convince myself. I remembered how I promised I would if the thoughts came back, yet as soon as I pulled up my doctor’s number, I set my phone back down and started talking myself out of the call once more. Continue reading “Why These Myths About Suicide Are So Harmful”

5 Things I Would’ve Told Myself When Diagnosed with PANS

After eight years of a mysterious illness no one could figure out, one July morning in 2014, a neurologist finally cracked the code: I had PANS.  My body was attacking part of my brain, leading to all sorts of bizarre symptoms.

But at the same time that she shed a light onto my case, the new diagnosis plunged my whole family into a darkness we couldn’t have imagined.

Yes, we had an answer, but we’d also just opened a pandora’s box of questions without knowing it. 

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Why Autoimmune Encephalitis Doctors Need to Stop Ignoring PANS

Today is World Encephalitis Day, and I want to take a moment to shed some light on a certain controversy within the PANS and encephalitis communities:

Is PANS a form of autoimmune encephalitis, or is it something else?

Back in 2014, in a matter of weeks, I went from being a typical college student earning straight-A’s to a psychiatric cripple who was afraid to eat and didn’t want to exist anymore.  I also lost the ability to walk, was overcome with constant involuntary movements, and couldn’t stay awake for more than a few minutes at a time.

How could a person develop sudden-onset Tourette’s, narcolepsy, bipolar symptoms, and severe coordination problems simultaneously in isolation from each other? 

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These 3 Myths about PANS Are Ruining Lives: A Response to Misguided Medicine

Brain MRI

In 2012, when I developed an extreme case of Obsessive-Compulsive Disorder overnight, all I wanted was to get better—not to spend the next six years fighting to get treatment for a “controversial” disease.  However, when conventional therapies failed, and I rapidly declined after Strep and mono two years later, only steroids were able to help my severe psychiatric symptoms.  It was then that I realized the truth wasn’t always easy to accept: Continue reading “These 3 Myths about PANS Are Ruining Lives: A Response to Misguided Medicine”

Why PANS/PANDAS Awareness Matters: An Open Letter to Legislators

This week, legislators in Wisconsin have the opportunity to save hundreds of lives and millions of taxpayer dollars: a bill to establish an advisory educational council on PANS/PANDAS is under review.  New York is also considering similar policies, and several others including Virginia have successfully implemented them.

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I Graduated College with PANS, Lyme, and…. Highest Honors!

This weekend, I’ve defied all odds; I’ve done what never should’ve been possible…

I graduated from college, Summa Cum Laude… While in a long-standing battle with PANS and Lyme Disease!

When I was first diagnosed, it felt like my life was a tragedy, and PANS was the ending.  I was sure that it had completely ruined me, and pursuing my dreams seemed inconceivable…

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It Isn’t You: Defying the Shame of My Chronic Illness

Since the first day I became ill, shame was a mainstay in my life with PANS… Shame about irrational fears that no one understood. Shame that I felt no control over my mind or body. Shame that I couldn’t do what I once could. Shame that I lashed out at my parents and said things I never wanted. Shame that I was spending more time with doctors than friends. Shame that I’d become a different person that I hated.

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