Lifestyle
I just wrapped up the latest chapter of my favorite horror series, The Conjuring: The Devil Made Me Do It, and wow — this installment definitely delivered. I have an unusual affection for watching actors like Vera Farmiga and Patrick Wilson navigate eerie, demon-infested basements; their expressions can only be described by a new term I’ve coined — couragified.
Couragified (adj): “Feeling a mix of being terrified and utterly brave.”
While I enjoy a well-crafted scary tale, my relationship with jump scares is complicated. Each time those exorcism scenes unfold, my body reacts with involuntary muscle twitches. Yet, despite my efforts to steer clear of them, I can’t resist a good ghost story about malevolent spirits.
You might be thinking, “Jamie, why kick off a discussion about seizures with a movie that clearly triggers you?” The answer is straightforward: I’m no longer afraid to watch films featuring dark forces. Living in my own body has often been scarier than the most horrifying movies. I guess you could say I feel as couragified as Ed and Lorraine Warren, and I’m still here.
Back in 2019, I was a new mom to two small children, isolated from any family support. The stress and loneliness of daily life overwhelmed me. I was also grappling with the surprising physical manifestations of a new diagnosis: Complex Post-Traumatic Stress Disorder (CPTSD) resulting from childhood trauma. This led to an avalanche of shame, suicidal thoughts, and self-harm that felt suffocating.
I recall days when I honestly believed I wouldn’t make it through — some of those rock-bottom moments left me questioning whether disappearing would be easier. My body would uncontrollably shake and twitch for hours, and I had no control over it. At that point, I hadn’t started medication yet, and I felt like an exposed nerve constantly battling life’s challenges.
One evening, the shaking escalated to a point where I collapsed on my family’s bathroom floor, landing hard near my daughter’s nearly full practice potty. As her pee formed a mess beneath my writhing body, I lay there, ashamed and terrified, unable to stop. What on earth was happening to me?
These symptoms had become painfully familiar, and all I wanted was to heal. Therapy helped, I utilized emergency rooms, and medication has saved my life. I haven’t self-harmed in a year, and I no longer feel like a burden to those around me. However, it took me four exhausting years to finally understand the true cause of my uncontrollable shaking.
After enduring a 90-minute episode of shaking, I was taken to the hospital and received a definitive diagnosis. Alongside CPTSD, I learned I have Functional Neurological Disorder (FND), and the episodes I’ve experienced are known as Psychogenic Non-Epileptic Seizures (PNES).
According to The National Organization for Rare Disorders, Functional Neurological Disorder is “a medical condition where the nervous system functions improperly, affecting how the brain and body send and receive signals, rather than being a structural disease like multiple sclerosis or stroke.” FND encompasses a broad range of neurological symptoms, including seizures.
Commonly referred to as Conversion Disorder, FND exists at the intersection of neurology and psychiatry, which has contributed to stigma and a lack of reliable information. Traditional MRI scans and EEGs often do not reveal abnormalities in individuals with FND as they do with epilepsy, leading to neglect by the medical community. Many individuals living with FND face skepticism, isolation from fear of seeking help, and an unfortunate narrative from professionals stating, “It’s all in your head.”
This stigma is far more damaging than having FND itself. Thankfully, attitudes are slowly shifting, and I’m cautiously optimistic. It’s becoming increasingly recognized that this disorder is a significant source of disability and distress, often coexisting with chronic pain, fatigue, and trauma-related psychological disorders like CPTSD. My journey with non-epileptic seizures has been filled with chronic pain and fatigue, compounded by the mental health challenges stemming from my trauma.
Even the Epilepsy Foundation now has a dedicated section on their website for non-epileptic seizures, as estimates suggest that 20 to 30% of people visiting epilepsy centers for suspected seizures are actually diagnosed with PNES. Approximately 80% of those diagnosed with PNES have a history of psychiatric issues, often linked to past abuse.
“Understandably, many people’s initial reactions upon learning they have PNES instead of epilepsy are disbelief, denial, and confusion,” notes the Epilepsy Foundation. “Mental health issues carry stigmatized labels like ‘crazy’ or ‘insane.’ These stigmas run deep in our language and subconscious beliefs. However, individuals with PNES are not ‘crazy’ or ‘insane.’ They are often survivors of trauma. Their healing, both from the trauma and the seizures, largely depends on overcoming stigma and engaging with a mental health professional.”
In essence, the generational trauma I experienced significantly disrupted my mental and physical well-being. Realizing that I’ve been living with both disorders has left me with much to process and heal.
During a non-epileptic seizure, I remain fully aware. I might stutter or mumble incoherently, my limbs shake, and sometimes my eyelids shut, refusing to open. One particularly odd symptom is a forced frown that can persist for up to half an hour, making me resemble Robert De Niro in Meet the Parents, no joke.
All humor aside, navigating life with CPTSD and FND often feels like being trapped in a dumpster fire that keeps reigniting. I can’t control the flames, nor have I figured out how to fully escape. Importantly, I didn’t ignite this fire, and I’m not the one causing it to flare up repeatedly. Thankfully, cold packs, medication, therapy, and even cannabis have created a stronger defense against the chaos, for which I am grateful. Yet, it remains a struggle.
And that’s perfectly okay. I’ve learned to accept that I don’t have to be okay all the time.
While I may not have all the answers or a guarantee of complete recovery, I am determined to heal as much as I can and share my story with other trauma survivors. No one should face seizures of any kind alone. I will continue to confront this inner and outer turmoil with curiosity, willingness, and self-compassion. I keep being couragified.
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Search Queries:
- What are non-epileptic seizures?
- How does trauma affect seizures?
- CPTSD and its symptoms
- Living with Functional Neurological Disorder
- Understanding Psychogenic Non-Epileptic Seizures
In summary, my journey through trauma and its physical manifestations has led me to uncover the reality of my condition, which is often misunderstood. By sharing my experiences, I hope to connect with others who are navigating similar struggles, ensuring that no one has to face their challenges alone.
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