They say that “school refusal,” or a deterioration in school performance, is a hallmark symptom of PANS/PANDAS.
As I hurried off to class the other week, suddenly, I knew things were awry: it was that strange and all-too-familiar feeling in my head that foretells an atonic seizure.
For the last eleven years of my life, I’ve battled a debilitating yet misunderstood autoimmune disease called PANS. It’s a disorder where an infection or an environmental trigger confuses your immune system into attacking your brain. This leads to all sorts of problems like OCD, anxiety, depression, tics, involuntary movements, cognitive problems, and many more horrible things. It affects at least 1 in 200 people, but you’ve probably never heard of it. Many doctors haven’t, either.
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.
This week, despite recently having the best few days I’ve had in several years, my OCD came roaring back, worse than it’d been since 2014. I started ticking again, too. People would say things to me, but their words made no sense. All the symptoms that I thought were gone returned to taunt me. Just as you think you have the upper hand with this disease, it can swoop in to tear you apart all over again!
This Labor-Day weekend, while you were outside grilling burgers and hotdogs, and some other college students were drinking and partying, I was all alone, locked in my apartment, doing nothing but homework and chores… And I’m so thankful I was.
It’s 6:00 on a Friday night, I’m drenched in sweat, sitting on my bed with no pants on, and mumbling nonsense. Tears are running down my face for no clear reason, and I feel outside myself, detached from reality. As my mom peeks into my room to bring medicine, I whisper that everyone hates me, warning that the Universe is out to get me. I have no idea why I’m saying or doing any of this—words are coming from my mouth and I can’t stop them. Continue reading “I Lost My Mind… But Haven’t Lost Hope”
In the past three years of running this blog, one of the most common questions I get asked is, How have you been able to do college when you’ve been so sick?
Truth be told, when I look back at the last four years, I’m surprised by it, too. And not only have I made it through eight semesters, but I’ve made good grades. This sounds like an impossible feat for someone fighting an illness that causes severe mental disorder and sometimes severely incapacitates my cognition, but over the next two posts, I’m going to show you how I did it.
These posts might be longer than usual, so I hope you’ll stick around! This week, I’m going to answer one part of the question…