TRIGGER WARNING - for those of you who might be triggered by abuse survival stories, please be cautious about reading this article.
At ThrillWriting, I am particularly grateful when survivors come forward to tell what it's like to live with the aftermath of a crime. So many times in books, when a crime is over, the character moves on with life. I have professed many times before, I think it's important to write things right. And writing crime scenes right means writing the effects of the crime on the character.
In the case of crime survival, one important reason for due diligence and correct portrayal is that people without context learn from literature. If we as writers say, "She was held at gunpoint," and in the next scene she's brushed it off like dust from her hem, then that is the expectation for real people in real-life situations, and it's just not the truth.
Today, is mostly about PTSD. You can read about this condition HERE. But I would like to introduce you to another linked diagnosis called NEAD (non-epileptic attack disorder) or PNES (Psychogenic nonepileptic seizures). For today's article, we will call it NEAD. NEAD has many characteristics of an epileptic seizure without the associated electrical pathways associated with epilepsy.
ThrillWriting welcomes our guest Hannah Byrnes; this is Hannah's story:
Hannah -
My story begins at age 7, when a well respected and sought after dog show judge showed an interest in my dog handling abilities.
I was regularly winning competitions with my pets and had qualified for young handler of the year and this was the man everyone said would coach me. Little did we realize at the time but this man was a pedophile who by 1990 was found to have abused over 30 children, including me. No matter what anyone says, there is a lot of guilt, shame, confusion and embarrassment over abuse.
Its often how other people react in the aftermath that causes the most damage. If you tell someone their immediate reaction is to tell you that its not your fault, and of course they are right. Yet every day discussions take place about how "children today are more promiscuous" that girls dressing in short skirts and makeup make them targets. Imagine how that feels at aged 7?
I went from a happy little girl who danced with fairies in the garden to being isolated, withdrawn and suffering from extreme night terrors. Eventually my brain learned how to block it out completely and until the age of 14 I could not remember anything from my childhood.
But then my brain decided it was time to deal with it and saw the start of flashbacks, hallucinations, absence seizures and depression. To make matters worse I suffered two, independent, sexual assaults as a teenager. The police were supportive and amazing yet there is a lot of ignorance regarding rape and sexual assault that is commonly conveyed in conversations.
But then my brain decided it was time to deal with it and saw the start of flashbacks, hallucinations, absence seizures and depression. To make matters worse I suffered two, independent, sexual assaults as a teenager. The police were supportive and amazing yet there is a lot of ignorance regarding rape and sexual assault that is commonly conveyed in conversations.
False rape claims are reported in the media yet statistics show that 6% of all crimes are false. I have seen plenty of men convicted of perverting the course of justice in the name of insurance or to get back at someone yet these stories do not attract the same media frenzy as a false rape claim. As a woman, being met with messages not to get drunk, not to give out false signals or wear revealing clothes is victim shaming. I even asked the rhetorical question of "why does this happen to me?" to get met with "you do not walk down the street with your head held high". So, you can imagine it is very difficult to speak openly about any of this for fear of being somehow blamed or treated differently.
But the statistics for women suffering from assault are so high that chances are that female colleague[s] in [your] workplace have experienced the same as me, so from that perspective you should be aware of the effect of 'victim shaming' can have in the workplace. This cultural attitude makes it more difficult for people (men included) to speak out about sexual harassment in the workplace...
Fiona -
But the statistics for women suffering from assault are so high that chances are that female colleague[s] in [your] workplace have experienced the same as me, so from that perspective you should be aware of the effect of 'victim shaming' can have in the workplace. This cultural attitude makes it more difficult for people (men included) to speak out about sexual harassment in the workplace...
Fiona -
Can you talk about how your NEAD diagnosis came about?
Hannah -
In short, I had started developing seizures when I was 14. It was diagnosed as epilepsy and for many, many years I had frequent seizures, as many as 50 a day at times. I was heavily discriminated against and developed an interest in disability rights and studied law.
In short, I had started developing seizures when I was 14. It was diagnosed as epilepsy and for many, many years I had frequent seizures, as many as 50 a day at times. I was heavily discriminated against and developed an interest in disability rights and studied law.
It was only when I was 29, when the seizures were so bad that they were considering neurosurgery that they actually reconsidered the diagnosis. That was when they linked it to my abuse as a child.
You see, when someone experiences abuse they can separate from the images and feel nothing, I can describe what happened to me in great detail but be very cold. However, it was when I was working a case involving child pornography that my flashbacks and seizures triggered.
You see, when someone experiences abuse they can separate from the images and feel nothing, I can describe what happened to me in great detail but be very cold. However, it was when I was working a case involving child pornography that my flashbacks and seizures triggered.
It lead to the correct diagnosis and ultimately my being cured via extensive therapy. I became an advocate, as PTSD is misunderstood, it is feared like many mental health and films etc tend to tell of the war veteran returning. Yet,
- 80% of people with PTSD are women
- 1 in 4 women in their lives have suffered sexual assault
- 20% of misdiagnosed cases of epilepsy is often NEAD as a result.
Fiona -
How did your physicians put this together? What are the symptoms of NEAD? Do they vary person to person?
Hannah -
I had been dealing with the same team, and then moved. I was referred to a new hospital which just so happens to be the best in the country for NEAD. They went through my entire history, and I was admitted to the hospital for a week. They videoed me; I had an EEG on all week, and they would put me in various situations to induce a seizure. It was then that they found that my brain waves had nothing to do with my seizures. In epilepsy there is a correlation.
How did your physicians put this together? What are the symptoms of NEAD? Do they vary person to person?
Hannah -
I had been dealing with the same team, and then moved. I was referred to a new hospital which just so happens to be the best in the country for NEAD. They went through my entire history, and I was admitted to the hospital for a week. They videoed me; I had an EEG on all week, and they would put me in various situations to induce a seizure. It was then that they found that my brain waves had nothing to do with my seizures. In epilepsy there is a correlation.
The symptoms of NEAD are varied but look like epilepsy, so you will have types of seizures including absences where you just black out, but they may be accompanied by various behaviours as well or occur in particular emotional circumstances
Fiona -
You were presumably taking anti-seizure medicines all along and they did nothing to stop this - but did they do you any harm along the way?
Hannah -
The seizure meds did not work, or I would become violently allergic to them very quickly, so lots of hospital trips. Hence why I eventually got referred because of my difficult-to-control epilepsy.
Fiona -
You were presumably taking anti-seizure medicines all along and they did nothing to stop this - but did they do you any harm along the way?
Hannah -
The seizure meds did not work, or I would become violently allergic to them very quickly, so lots of hospital trips. Hence why I eventually got referred because of my difficult-to-control epilepsy.
I was actually on one for several years that doubled as an antidepressant SSRP - that worked for a time unsurprisingly, but then the seizures came back and an increased dose nearly killed me. I had several tonic clonic seizures within 24 hours and could not come out of it, it took 3 vials of ketamine for them to stop.
Fiona -
Tonic clonic seizures are convulsive seizures.
Fiona -
Tonic clonic seizures are convulsive seizures.
Is NEAD always correlated with PTSD?
Do you get a dual diagnosis or does NEAD take the place of a PTSD diagnosis? Can you explain how that works from a clinician's point of view?
(Hannah is under the UK health system. Check your character's country for their diagnostic criteria, as they sometimes differ.)
Hannah -
PTSD and NEAD are both dissociative disorders that have separate classifications under the ICD-10.
Hannah -
PTSD and NEAD are both dissociative disorders that have separate classifications under the ICD-10.
Fiona insert: USA uses DSM V
Hannah (cont.)
I was diagnosed with both because of my circumstances, but they can occur without each other. Often NEAD is related to trauma but it can also be hormone imbalances or related to another type of mental health disorder. seizures can be convulsive or absence seizures just like epilepsy.
Fiona -
What is the therapeutic intervention? What kind of health care professionals are involved? And what is the outcome prognosis after someone receives a diagnosis?
Hannah -
In cases of trauma, like mine, intervention is psychotherapy. Prognosis depends on how willing a person is to face their demons and change. Remember the seizures are a pattern of behaviour that has developed as a form of escapism.
Fiona -
What is the therapeutic intervention? What kind of health care professionals are involved? And what is the outcome prognosis after someone receives a diagnosis?
Hannah -
In cases of trauma, like mine, intervention is psychotherapy. Prognosis depends on how willing a person is to face their demons and change. Remember the seizures are a pattern of behaviour that has developed as a form of escapism.
A lot of people relapse. But not me; I'm 5 years clear.
With me, because I was just 7 when I was abused, my young mind learned to put my emotions in my dreams and nightmares. So I was very blocked emotionally for years. imagine feeling no fear, no anxiety, no guilt, no shame yet no love, no joy, no happiness
Therapy for me, involved going back into my dreamworld.
With me, because I was just 7 when I was abused, my young mind learned to put my emotions in my dreams and nightmares. So I was very blocked emotionally for years. imagine feeling no fear, no anxiety, no guilt, no shame yet no love, no joy, no happiness
Therapy for me, involved going back into my dreamworld.
Most commonly, they look at the belief systems you have about yourself and start to unpick those. Deep down, as a result of the abuse, I believed I was defective and unloveable, so I had developed high standards of myself as a result, but when my law career took off, I felt like an imposter. So we dealt with that negative chatter in my head first, because I was really cruel to myself, but as we went deeper, it became difficult to unlock my emotions around the abuse, so I went to a hypnotherapist...that's where the major work came.
This last year, I have faced divorce, a change of life, etc...but my dreams have been the key so I started writing and the book is the result.
Fiona -
To read about hypnotherapy and crime go HERE.
On ThrillWriting, my readers understand that it is important to write it right - and that means not falling into the stereotype trap, but exposing victim issues as what they are in reality so their plotline is correct. As a survivor advocate, what would you like to see writers included in stories both written and on TV/film
Hannah -
Well firstly, PTSD is not simply a series of flashbacks that cause someone to blow up a house or try and kill someone. Indeed, the flashbacks may not be that obvious either. They are only triggered in situations that cause you to feel exactly as you did at the trauma, and that is why it can seem bizarre.
For example, part of my abuse was that if I did what my abuser wanted, he would make a big show of giving me attention and prizes. So when my boss gathered everyone around, because I had received a client compliment, and he wanted to give me a bottle of wine, I panicked.
PTSD is not always the angry outburst that people tend to write about.
In cases where there has been abused as children, they may have been subject to such severe subjugation that they literally curl up in a ball and shut out the world, thats what I do.
Disassociation causes you to react in ways that protect you from feeling like that again. Relatively nice things can cause flashbacks if, like me, you don't believe you are worthy or have been conditioned to believe that no one can do anything for you without wanting something.
There is a great book every writer should read about life traps called Reinventing Your Life. It explains how life traps are formed and how they expose themselves. It was the book that saved my life.
Fiona -
So when you received the bottle of wine and felt panic what was the external manifestation? Were you able to hide it? Or was it evident and if it were evident did you then need to explain your behavior?
Hannah -
I went very quiet. I was able to hide it, but it spoilt the occasion for me.
Fiona -
As an advocate, you've heard many stories how does PTSD specifically affect a survivor's employment. How could they discuss the situation? What should their expectations be about their employers reaction?
Hannah -
I think anyone with mental health conditions can face stigma and stereotype and a lot of this comes from fears based on inaccurate or dramatic portrayal of those conditions.
I am an employment lawyer, so I handle discrimination cases every day. In the UK there are laws to protect people with mental health conditions from discrimination. In my experience many employers are supportive, but if you are still having seizures or symptoms, it can be a difficult as the employer has to balance the needs to the business against the duty of care towards the employee.
Of course discrimination does occur at an alarming rate. Some discrimination is overt. I have been told that they don't think I can handle the stress. Some is subtle. "Oh, we really need someone who can drive." (for a desk bound job). There is also harassment such as colleagues sending jokes or making remarks that someone is 'mad'. As a result, many people won't disclose their issues until part way into their employment which means they don't get the support they need from their employer
Fiona -
What message would you like us writers to walk away with?
Hannah -
What message would you like us writers to walk away with?
Hannah -
Thinking on from a writer's perspective, the real story is in the courage it takes to address your past in those circumstances.
For me, my abuse gifted me with a wonderful vibrant imagination that I am now using to develop books. It can take a while, but when you are walking in darkness of PTSD, it is realising you hold the light all along that releases you as in The Dragon Children, which contains a lot of totems and messages about facing fears, being your truth etc...it was a story of transformation.
Fiona -
The Dragon Children is a childrens' book that is just coming out.
Hannah -
The Dragon Children:The Prophecy has nothing to do with any of my experiences. However, it came to me at a time where I had completed my treatment and had started to identify everything around me that was keeping me in a bad place. It came to me in a series of dreams, and is about being true to yourself and walking your path to destiny. I learned a lot about myself during the creative process and am happier than I have ever been.
Just like it my truth is to be a writer. I had enjoyed reading and creative writing as a child but through my experiences my creative side got shut down with my emotions so it is a real pleasure to be able to connect with that part of myself again. Writing is not therapy for me. However, it is my passion and my stories come from my heart. I hope that many will enjoy them.
Decades ago, a war raged in Dragonsreach. The Iron King’s giant machines destroyed a whole flight of dragons. Now only two dragons and their nest of eggs remain.
Kai is the shy, studious son of a TV Astrologer. Pony-loving Bridget hates maths and wants to be a Knight. They are the Dragon Children, destined to restore man’s faith in magic. Their arrival means that an age-old prophecy may be fulfilled, and dragons will rule the skies again.
After a legion of iron birds attack, the dragon eggs are lost and Bridget and Kai are separated. Each sets out on an perilous quest leading to dragon hordes, mysterious wizards, invisible temples and ancient magic before facing a deadly foe who is not what it seems.
The Author has pledged 100% of the royalties from The Dragon Children: The Prophecy (at least £5000) to Make-A-Wish® Foundation UK Charity Registration Nos. 295672/SC037479 to help grant magical wishes for children and young people who are living with life-threatening conditions.
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