This time of the year is always difficult for me. Seven years ago at this time, I had the worst PANDAS flare of my life and descended into a terrifying world of OCD, odd behavior, insomnia, and depression. For a time, my symptoms completely tore apart my family.
I’ll never forget when I first made my parents cry. I was twelve years old, and we didn’t even know I had OCD, let alone PANS. Had we known, things never would have gotten so bad. My parents were almost as terrified as I was at the change they had seen in me.
I thought I was going crazy. I had to speak a certain way. I had to walk “just right.” I needed to be sure I chewed my food in a particular manner. And God-forbid if I breathed the wrong way… I also felt like I needed to jump out of the second-story window of my room. Why? I didn’t know. It just seemed like something I should do—it wasn’t because I was trying to hurt myself. I would impulsively taste things that shouldn’t be tasted—like shower gels and wet rocks I found in the woods. Again, I didn’t know why I did those things, but I just felt like I had to.
I refused to do my schoolwork. I looked at the words on the page of my textbooks, and they become horrible blasphemous thoughts in my mind. The thoughts never left me alone. Every moment of every day, no matter what I did, there they were to torment me. Everything I did was used against me to become something terribly immoral that showed I was a wicked child. To me, having the thoughts come was just as bad as saying them out-loud and meaning them—damning and perhaps unforgivable.
During school, I would sit and stare at the blank lines of my notebook paper, unable to explain that I was terrified of what the words I was supposed to write could become in my mind. My mom (who homeschooled me at the time), eventually would become exasperated, and I would run out of the room both because I couldn’t handle the OCD thoughts and because I couldn’t stand to make her so upset. But I couldn’t even tell her that I never wanted it to be that way. I didn’t want to not work. I didn’t want to make her cry. I just wanted the thoughts to not be there.
“Why are you doing this to your mother?” my dad asked one night, as the three of us sat around the kitchen table. “She is sacrificing her time to teach you, and you aren’t even trying to work with her.”
I will forever remember that lonely tear that streamed down my mom’s face at that moment. My best friend, teacher, and care-taker had now become someone I had deeply wounded by unintentionally fighting against her.
I never meant it. I wished I could tell my parents that I wasn’t trying to upset them. I longed to break my silence and explain my inner battle, but telling anyone the horrible thoughts I was having would show them how terrible of a person I really was. So I sat there in silence that night, unable to respond with even one word, because whatever I said would be turned into another obscene thought in my mind. I couldn’t let that happen, because it might get me thrown into Hell forever.
“Why won’t you answer me?” my dad said.
“I—I…” I couldn’t get the words out. Another thought had come into my mind, and I had to be sure I canceled it properly before going on. “I—just… I don’t know. I am—I can’t.” The thoughts were overwhelming my mind again, and I was terrified that I wouldn’t be able to know I had cancelled them properly if I said anything else.
I couldn’t handle seeing my parents so upset anymore. I ran upstairs and slammed the door to my room and cried. Why was this happening to me? How could I have let my mind become so out of control? I knew I had no control over the thoughts, yet I was somehow convinced they were all my fault.
If there is one thing I would have told my parents back then if I could have (besides telling them that I actually had an autoimmune disorder causing all my OCD and strange behaviors), I would tell them that I hated what I had become and what I was doing to them. I would tell them that I didn’t want to be doing any of it—I was simply scared out of my mind, by my own mind. I wished I could have told them that all the pain I caused them was wounding me even more.
I longed for my parents to understand the constant terror that I lived in and the feeling of utter hopelessness so that they could see I wasn’t just being a brat. I wanted to not feel like I was so alone. But I was afraid that talking about the thoughts would end up proving to me and everyone else that I really was a reprobate. As painful as it was, it seemed like the only thing I could do was to keep pretending that my silence and school-refusal was just me being a rebellious preteen.
After three months in a perpetual state of OCD fear and bizarre and even dangerous behaviors, I finally began to come out of the flare. Looking back, I had been having joint pain, fatigue, and consistent low-grade fevers throughout the entire episode—symptoms of another strep-related illness called Rheumatic Fever. When these began to disappear, so did all my psychiatric symptoms. (Of course, my pediatrician at the time never even thought to do a strep culture and wrote it all off as “depression” and “isolation from homeschooling.”)
It took five years of time passing and me eventually being able to name my intrusive thoughts and compulsions as OCD before I would even let my parents bring up anything about what happened in 2007. When I came out of the flare sometime in early 2008, I apologized profusely for the wounds I unwillingly made in my relationship with them. But those wounds did heal, and my brain is healing, too. Today, my parents and I have a great relationship, and of course, now they understand what I was dealing with—and they remind me it was never my fault.
I wish I could have told my parents in 2007 where things would be today. I wish they could have seen me now, in my right mind, going to college. I wish I could have told my parents that, even though I was going to have another terrible flare at nineteen that led to a misdiagnosis of narcolepsy, made me temporarily lose the ability to walk, and caused a tic disorder to appear overnight, we would finally find the answer to all of my strange symptoms. I wish I could have told my parents that even though my case was extreme, I was going to get 100% better.
Most of all, I would tell my parents “thank-you” for persevering through my strange behavior in 2007, for not giving up on finding a diagnosis, and for sticking by me as I continue to recover today.