In Our Own Words: Stories of those living with, learning from and overcoming the challenges of psychogenic non-epileptic seizures

by Mary Martiros, Lorna Myers

This book is a compilation of the experiences of people with psychogenic non-epileptic seizures (PNES). This psychological disorder has received little attention in the medical community and those experiencing PNES have often been misdiagnosed as having epilepsy. Some have been told that they are faking their seizures because their seizures do not register on standard tests for epilepsy. Non-epileptic seizures usually occur as a result of past trauma (PTSD) or stressful events which cannot be fully processed by the mind. It is our hope that the telling of our stories will give a voice to those who suffer with PNES and bring awareness to this disorder, educate medical professionals, families and friends of those with PNES and create a new level of compassion and understanding in order to bring about healing for PNES sufferers and all of those affected by this illness.

164 pages, Paperback

First published September 10, 2015

Reviews

[Lady Makaveli · Rating 5 out of 5]

First, I am not sure why people have rated this book so low... It is a brilliant read and I believe should be a required read for anyone in medical schools or profession. PNES is a real, severe and distressing disorder for like all invisible illnesses (mental illnesses) it is dismissed with too much ease at the doctor or responding paramedics leisure. They will blame the victim, claiming the person to be attention seeking or making it up, simply because it is not an epileptic seizure. The ignorance towards mental health alone is terrifying and these stories are evidence of the stigma we still have to overcome and the realities of the dangers that ignorance brings to the mental health community as well as the pain it gives each individual suffering and turned away, looked down upon for suffering from a disorder unfamiliar to many.

This book is wonderful in that people get to tell their story by answering a set of questions. The book is thorough and full of cases that will help anyone who reads understand this disorder, and hopefully prompt them to want to learn more.

[Wil · Rating 5 out of 5]

Invaluable to anyone living with PNES, or who knows somebody who has PNES. Eye-opening and jaw-dropping to see what some people go through, the fact that the medical community knows so little and in some cases, refuses to try to learn, is unbelievable. Some of these firsthand stories are really tough to read, but all the more important.

Reading an informative book about PNES to learn more about it is certainly great, but to read firsthand the varying experiences people have is even more illuminating. With any luck more awareness can be brought to this condition and treatment will continue to improve.

[Traceylee · Rating 5 out of 5]

Why

I have had these all my life and can relate to everything said as I have had so many tell me I am faking it. ITs ashamed when your own dr won't believe you. Now seeing a specialist that can understand feel more comfortable.