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.
For years, my symptoms and my shame about them were such a normal part of my existence that I almost forgot they were there—or I forgot that I’d ever known a life that was any other way. However, when my illness flared up worse than ever before after my first year of college, it all became impossible to ignore.
It was then, in 2014, that PANS tore my whole life down to the ground, leaving me as merely a shell of who I once was. Although I returned to school that fall, I avoided my friends as much as possible for a while because I was so ashamed of what had happened to me. I was ashamed of being that sick. I was ashamed of the uncontrollable movements and tics that had abruptly begun a couple of months earlier. I was ashamed that I could barely walk. I was ashamed that I had to use disability accommodations for my cognitive problems. I was ashamed of no longer being myself.
I felt like I was living my days wearing the most embarrassing costume of an illness wherever I went and no matter what I did. I felt like my all-consuming symptoms were surely masking who I was and making the real me invisible to everyone else, like a disguise that I never wanted to wear. I thought that my constant involuntary movements were like the most hideous scar from my ordeal, and I was afraid of anyone asking about them, for fear of bringing my shame into the light.
In my first year away at college, I used to go to a worship/prayer service in my school’s chapel every Wednesday night. It was my safe place—a time with friends that were always there for me and never judged. When I returned for my second year, just weeks after my catastrophic PANS exacerbation, I forced myself to keep going, despite my embarrassment, but my illness made me feel like an outcast. I was so ashamed of who I thought I’d become that I didn’t think I really deserved to be worshiping alongside everyone else. And I hated the way my body jerked around while I was trying to stand there and sing or pray, so I tried to stay in the back in order to go unnoticed.
One night, however, a leader came up beside me and stood quietly. “You know,” she whispered. “He sees you… And I see you.”
I turned and looked at her for a moment, forcing a polite smile and straining to stop my movements. I wish you didn’t see me, I thought to myself, as I resumed staring at the floor. I wish I could just disappear…
Sensing my discomfort and sadness, she gently reached out for my shoulder: “I mean that I see YOU—not the disease. You’re so much more than that… It isn’t you.”
“It isn’t you…”
Today, three years later, those three little words continue to echo through my mind. They are the antidote to the poison of shame that haunts so many of us with PANS.
This disease has the most horrible way of completely taking over your life— even your very mind, so it’s easy to feel like you and PANS are one and the same.
It feels like YOU are the monster that yells obscene things at the parents you love. It feels like YOU are the one causing so much pain and trouble for yourself and everyone around you. It feels like YOU are the one who’s inadequate, messed up, and failing in every possible domain. But it isn’t you—it’s the disease.
It has taken me years, and constant reminders from my family and therapists, to finally accept that PANS and all its repercussions were never my fault. Yes, I do everything I can to fight it and to not have it make me behave as someone I’m not, but the impulses and the symptoms were never my own. I still feel bad about how much longer it takes to do my school work and how much harder it is to take care of myself, but you know what? It isn’t me—it’s the disease.
Anyone who is trying to live any kind of life in the face of PANS, no matter how “slow” it may seem to yourself or to others, ought to be commended. It takes an incredible amount of bravery to live in spite of a condition that makes existing inside your mind completely terrifying. But even if you are only surviving but not yet truly living, because of PANS… There’s no shame in that, either. It isn’t you—it’s the disease.
After eleven years of PANS, I can finally see that there is nothing to be ashamed of if you have it. We’re all doing our best, fighting for our lives. Others can’t see the inner demons we fight every hour of every day, just to be able to appear “normal” to most on the outside. So we don’t only get to be unashamed—we are the bravest warriors.
Shame isn’t us—it’s the disease.
Strength, courage, persistence—those are who we are.