This blog post has two parts to it. The first part will talk about a wonderful new book called “In Our Words” edited by Markus Reuber, Gregg Rawlings and Steven C. Schachter and which features testimonials of those living with PNES from around the world. It can be pre-ordered on Amazon with official release date of June 26, 2018 (https://smile.amazon.com/Our-Words-Personal-Non-Epileptic-Brainstorms/dp/0190622776/ref=sr_1_1?ie=UTF8&qid=1529362303&sr=8-1&keywords=in+our+words+reuber).
In this powerful text which features so many brave volunteers who share their experiences of living with PNES (either as a patient or a caregiver), you cannot help but see the humanity of these individuals. Some of the contributions are filled with sadness and hopelessness, others have “fight” in them and challenge the disorder they have been afflicted with and how others perceive and treat them, and yet others come across with a message of hope. All together this is a beautiful and touching compilation of voices that when read I am confident, will move the reader and add to our understanding of the complexities of life with PNES.
So, it just happens that after reading through most of “In Our Words,” I ran across a news story today that reminded me of the realities our patients continue to face. The article talks about an emergency room doctor who was suspended for mocking and mistreating a patient who was having a panic attack. Go here to read the full article: http://www.msn.com/en-us/news/us/emergency-room-doctor-suspended-after-being-caught-on-video-mocking-patient-suffering-anxiety-attack-are-you-dead-sir/ar-AAyPghw?li=BBnb7Kz&ocid=HPCDHP
The article reminded me of the many unhappy medical experiences some of my own patients have told me about and also brought me back to some of the testimonials from “In Our Words.” This news article underscores how much work is still needed to change attitudes and behaviors of health professionals who remain ignorant and dismissive about mental health issues.
Books like “In Our Words” are moving us in the right direction to change the experience of PNES. Wouldn’t it be great if Dr. Beth Keegstra (the doctor who was suspended) and others like her would be required to read this book?
I want to end this blog post with an excerpt from the foreword by Reuber, Rawlings, and Schacter: “Many of the writers in this book criticize how health care professionals have responded to non-epileptic seizures (especially those involved in providing emergency care), but others describe individual clinicians who managed to make a very real and positive difference in their lives… by telling their stories, the contributors to this book place a responsibility on those organizing health and social care to develop adequate services for people with non-epileptic seizures. Current approaches to non-epileptic seizures are reminiscent of how people with epileptic seizures were discriminated against in previous centuries, before the medical profession recognized the biological basis of epilepsy. The individuals who have helped fill the pages of this book with their experiences are not content to continue suffering in silence. Combined their voices form a powerful chorus: There is no reason why non-epileptic seizures disorders should not be treated at least as well as epilepsy or any other condition that is thought to be “fully explained” by a narrow biomedical view of disease. There is no justification for discriminating against people because the seizures causing their distress and disability are not associated with epileptic discharges in EEG recordings.”
In closing, for Dr. Keegstra, I hope this experience will enlighten her and help her grow and be such a better medical doctor than she appeared to be in that video. And for all of us health professionals, let’s all aspire to being the type of clinician mentioned in the book, those “who managed to make a very real and positive difference in their lives.” I strongly recommend reading “In Our Words” to truly understand what life with PNES is all about.