PNES: A Raw Declaration of Defiance

I've held my tongue for too long, tried to be understanding, patient, and strong. But today, I'm letting it all out. SCREW YOU, PNES. You've stolen too much, and I'm calling you out.

You crept into our life uninvited, a neurological intruder masquerading as epilepsy. Psychogenic Non-Epileptic Seizures – a name that barely scratches the surface of the havoc you wreak. You've robbed my husband of the simple joy of predictability, turning every day into a potential minefield of episodes and anxiety.

How many plans have you shattered? How many moments have you stolen? Birthdays, anniversaries, simple outings – all tainted by your looming presence. You've forced him to press pause on his ambitions, to recalibrate his dreams, to explain and re-explain his condition to puzzled onlookers and well-meaning but clueless acquaintances.

SCREW YOU for being invisible, for making him look "fine" on the outside while he's fighting a war within. For making him doubt him, for the times he's wondered if it's "all in my head." For the skeptical looks from doctors who don't understand, for the frustration of treatments that don't quite fit.

You've tested the patience of his loved ones, made them worry, made them afraid. You've turned him into someone who needs constant consideration, altering the dynamics of his relationships. SCREW YOU for the guilt he feels when he see the concern in my eyes, for the independence you've chipped away at, bit by bit.

Anxiety, depression, frustration, and seizures – your constant companions. You've made him question his strength, his resilience, his very sense of self. SCREW YOU for the tears he's shed in private, for the screams he's muffled into his pillow, for the times he has felt utterly alone in a crowded room.

But hear this, PNES – you haven't won. You've taken much, but you haven't taken everything. SCREW YOU, because despite it all, he's still here. He's still fighting. You've shown him depths of strength he never knew he had. You've taught him compassion for invisible struggles, appreciation for good days, and the power of vulnerability.

So yes, SCREW YOU, PNES. But also, thank you. Thank you for showing him who our true friends are. Thank you for teaching him to advocate for himself. Thank you for making him appreciate the small victories, the seizure-free hours in a day, the moments of pure, unadulterated joy that shine even brighter in contrast.

You've stolen too much, it's true. But you haven't stolen our spirit. You haven't stolen our hope. And you sure as hell haven't stolen our voice.

We are taking back control, one day at a time. I'm sharing his story, raising awareness, and connecting with others who understand. I'm exploring every avenue for management and healing for him, refusing to give up.

So SCREW YOU, PNES. You may be a part of our life, but you do not define him. He is more than his condition. He is resilient. He is a warrior. And we are just getting started.