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?
Continue reading “How I Was Diagnosed with PANS When I Was 19”
The other night, a horrifying realization jolted me awake: I haven’t rode my bike in over two years.
Suddenly, the memories came rushing back, and I imagined myself biking like I once did. I remembered how, in college, I would bike to errands and class. I remembered zipping around town with the wind in my hair. I remembered the long rides in the bike lanes and on the greenway, and my riding buddy’s incredulousness when I’d already run ten miles that morning and still was hard to catch.
Continue reading “When Good Memories Torment You”
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.
Continue reading “Dear Sick, Scared 2015 Me… A Letter to Someone Whose Illness Uprooted Their Life”
For six years, I kept a secret that I was determined to take to my grave. I pretended I wasn’t constantly afraid. I made excuses when asked about my unusual behaviors. I was so hell-bent on avoiding being found out that I did everything I could to fool every psychologist, therapist, and doctor I encountered.
And the whole disaster started with one thought.
When I was eleven, while lying in bed, something along the lines of “F– G*d” popped into my brain. As the good-girl church acolyte that I was, I felt horrified. What did it mean that a sacrilegious thought like that could appear in my mind? I felt like I had to do everything I could to keep it from coming back or else that meant I was a bad person. I already felt incredibly guilty that it had happened even one time.
But as the days went on, the more I tried to resist thinking that thought again, the more often it happened and the more it evolved and mutated into increasingly offensive thoughts until they had some of the most explicit, blasphemous, sexual, and violent content imaginable. Everything I didn’t want to think, I ended up thinking. I fell into complete and utter despair. Continue reading “The Kind of OCD We Need to Talk About”
[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”
As someone with a chronic illness that was once misdiagnosed as a psychiatric disorder, but who also does have mental health issues, it’s a constant balancing act trying to understand my brain while convincing doctors that mental illness is only one of my problems.
For eight years, the conclusion was that I was sick because I was depressed. (Since when did depression cause visible joint inflammation?) Even as a kid, I knew better than to believe that.
I was only thirteen the first time a doctor misattributed my physical illness to my poor mental health, but I knew that I knew myself and my body better than a doctor who’d just met me:
“I’m not sick because I’m depressed,” I growled. “I’m depressed because I’m sick.”
Continue reading “What Mental Health Awareness Means When Chronically Ill”
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?
Continue reading “Why Autoimmune Encephalitis Doctors Need to Stop Ignoring PANS”
Last month, after finishing my first semester of grad school, the dread of having to come back in January to do it all over again drowned out any sense of accomplishment. Although I liked my colleagues, the truth is that I was miserable so much of that fall. And until now, I didn’t know why.
Continue reading “Facing The What-If’s of Chronic Illness: Why Do Grad School While Sick?”
“How’s grad school going?” my friend from home asked.
“I mean—I’m glad I’m trying it,” I stammered, going on about a few highlights.
“But do you like it?” she pressed.
The truth is that I’d been afraid to ask myself this very question, because I was afraid to learn the answer….
But first, how is grad school going?
Continue reading “How I Tackle Grad School with Cognitive Problems from PANS”
“I just can’t keep going.”
“I feel completely hopeless.”
“How can anyone live like this?”
These messages come to my inbox nearly every week from kids and teenagers who think PANS or Lyme is the end of the life they once loved; from adults who’ve been fighting for years, unsure how much longer they can go through the cycle of relapse, treatment, and recovery; and even from parents who are tired of being too strong for too long.
Continue reading “10 Ways to Feel Less Hopeless When Chronically Ill”