Events & News


Seizure Star: Katherine Berger

For NEREG's September 2017 newsletter, Katherine Berger, someone living with psychogenic non-epileptic seizures (PNES), a seizure condition often associated with PTSD and triggered by psychological stress, and a very accomplished author, sat down with us to tell us about her advocacy activities.  Even today, PNES is often misunderstood and ignored by many health professionals and the general public, but with a growing and empowered community, this is starting to change.  Kate has been a big part of this change by authoring a wonderful book called "View from the Floor".

How did psychogenic non-epileptic seizures (PNES) come into your life? What has this experiencebeen like for you?

When I was 17, PNES entered my life and changed it forever. The last eight years have been marked by countless ups and downs; periods of acceptance and periods of being royally pissed off about it. I never wanted PNES, but it happened. It fundamentally altered my life and who I am as a person. It has hurt so badly, but it has also been the impetus for many positive changes. PNES ripped up my plans for the future, but it also led me to where I am -- and who I am -- today, and I like that person.

When did you start to work on your book "View from the Floor" and why? How was the experience of putting your experiences down in writing? Was it helpful in some way?

In many ways, I began working on this book when I had my first seizure; that's where my story started. That season was marked by so much confusion and so little information. I was infuriated with the system, but forced to work within it. As I worked, I picked up a thousand tiny tips and tricks for how to navigate this mess. It felt criminal to keep that information to myself. I was exceptionally fortunate in the strength of my support system and ease of access to resources. I know not everyone has those advantages, and not everyone had the benefit (or curse) of experience quite yet. I wanted to share the wealth I'd received, and a book was the best way I knew how.

Writing this book provided me the opportunity to step out of my story. I gained some perspective and enjoyed the catharsis. But more than anything, the process was exciting. It energized me to think of readers putting it down and feeling empowered, like they had an ally. I have such a fire to keep PNES from claiming my life and I wanted to spread that to others, to encourage them to take PNES by the horns and fight for their lives back.

Did you ever encounter ignorant attitudes about PNES from medical professionals or the general public?

Absolutely -- and it's infuriating. Isn't it enough to have seizures? Must we constantly justify their validity? My greatest fear throughout this process was that others would believe I was doing this on purpose; that I was faking, purposefully invoking seizures or enjoying the attention. That fear only grew with each person who put air quotes around "seizures" or rolled their eyes. It's hard, but others' doubts have provided the opportunity for me to grow my confidence. I know this is real, and I'm extra grateful for people in my life who understand.

What do you wish you could tell others living with this diagnosis?

You are not alone.

It will not be this hard forever. You will get good at this. You will learn to work with and around it.

PNES is not shameful. You are no less of a person for having it.

You did nothing to deserve this. It's not your fault.

This will only define you as much as you let it.

View from the Floor: Psychogenic non-epileptic seizures: A patient's perspective can be purchased here:


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