To be faced with PANDAS is to have a lot of debilitating symptoms and feelings all at once that, in essence, make you lose who you are. There is much to say about what it feels like to have PANDAS, but if I had to sum up my experience in one word, I would say…
Terror.
One of the hardest things about PANDAS is that you never know what it’s going to do next. Just as you’ve finally gotten your life back, it can strike again. Or just as you’re sure the fight is hopeless, things might turn a corner. Sometimes, it seems like there’s no rhyme or reason to its course.
Indeed, it wasn’t too long ago that my doctor said I was in remission. My family and I were stunned at the improvements I was making after my tonsillectomy. But this week, the unthinkable has happened: I am, once again, having a flare.
When most people who’ve dealt with PANDAS or PANS think about being out of control, what probably comes to mind are episodes of rage, debilitating OCD, constant tics, and panic attacks. While these things are the most characteristic of the disorder, during the last few weeks, I’ve been finding that sometimes, you can be out-of-control and look totally fine on the outside.
A few months ago during one of my trips home, I came across an old lock-box where I used to hide things as a child, but I couldn’t remember what I would’ve put in it. Tiny toys? Candy? Secret notes?
What I found there instead shocked me.
It’s 3 AM on a Saturday night, and I’m not even close to being ready to sleep. Am I out late partying like some other college students? No, I’m unwillingly sitting on the couch doing nothing and putting off going to bed for no good reason, after trying and failing to get any homework done all day long.
It was the first full week of class, and just like Freshman year, I had gotten sick. My body ached. My head pounded. I felt exhausted.
When you have PANS, getting sick is often far worse than just feeling tired and congested—in the past, a simple virus could send me into a full-blown flare of severe OCD, panic attacks, involuntary movements, and even hallucinations. So naturally, when my nose started running last week, all I could think about was how much I didn’t want to flare. I couldn’t have cared less about the cold symptoms themselves.
After battling PANS for the past nine years of my life, I’ve been forced to grow up too quickly while being stuck as a child. I’ve had to mature to face up to my circumstances, but I’ve had to count on my parents to take care of me more than most others my age have.
At twenty years old, I’ve never held down a consistent, weekly job. I’ve never had a boyfriend. I’ve never gone on anything beyond a day trip with my friends without an “adult” present. Over the last year, I’ve let my parents make many decisions for me, because I’ve known I couldn’t trust my own judgement. In many ways, I feel like a young teenager.
“You’re better.”
Those are two words I never thought I’d hear from my doctor. But this week, I finally did.
As my mom and I made the trip to my doctor’s office this week, I couldn’t help but feel that things were different this time—and most of all, that I was different. I was more present. I was more aware. I was bright-eyed again. I was finally myself.
This time, unlike my last visit in May, I opened the office doors myself, grabbing the handles without flinching. I pushed the elevator buttons. I sat in the waiting room chairs without thinking about Lysoling myself when I got home. I realized that contamination OCD was finally letting me go.
Ever since my tonsillectomy, I’ve noticed my OCD dying down significantly. I’ve found myself touching cabinet knobs in the kitchen that I haven’t been able to touch in over a year. I’m not checking my room for people trying to hurt me. I’m not washing my hands all the time.
I’ve been in CBT all summer, but the improvement I’ve seen seemed to happen much more suddenly and with much less effort than what I normally get from using therapy techniques alone. It was as if maybe, I had less brain inflammation, because I no longer had an infection in my tonsils.
When I first found out that I needed a tonsillectomy, I made three appointments with three different doctors at two hospitals. While this may sound excessive, based on past experiences, I knew the first doctor or two might refuse to do the surgery as soon as I mentioned PANDAS, especially since my tonsils looked healthy on the outside.
Indeed, when my records were sent to the first doctor, my appointment was cancelled within two hours and my case passed to a different doctor in the practice.
