By Mirren Buchanan
Content warnings: This article mentions trauma, medical trauma, flashbacks and intrusive thoughts, and has graphic descriptions of seizures and choking.
When I was diagnosed with Non-Epileptic Attack Disorder (NEAD from here on) at the end of March, I sort of assumed that that was the end of my illness. I had been searching for an explanation to my seizures and funny brain blips for over a year and a half, and although NEAD wasn’t quite what I was expecting, it felt like closure. Over the coming weeks I experienced fewer and fewer seizures, and now I go weeks at a time without even feeling the effects of my brain disorder. Compared to the first few months of this year, when I would have multiple seizures a day and often couldn’t leave my flat without collapsing in the street (and being helped home by some poor stranger), it feels like I’m cured. I’m not.
I hadn’t really heard of or thought about medical trauma much until very recently. Through conversations with a good friend in a similar situation, I realised that over the past two- and a-bit years I’ve experienced a lot of it. Whereas general trauma is usually caused by abuse or neglect, medical trauma occurs when one ‘undergoes a serious medical procedure or illness’1. Although my illness was never life-threatening – and never will be - we weren’t aware of this before my diagnosis so every time I had a few too many seizures in a row I would end up in an ambulance on my way to the Glasgow Royal Infirmary. The worst night I can remember was when I had 16 seizures in the space of around 3 hours. I was mid seizure and being wheeled into resus when the doctor took one look at me and said I was fine, and just needed to calm down. I was wheeled out of resus and left on my own in an empty A+E bay lying flat on a bed, and I started choking on my own tongue. My Dad and my flatmate were about 20ft away in the waiting room and all I remember thinking was how I didn’t want to die alone surrounded by beeping machines while they were just through the door. After what felt like ages (but was probably only a minute), a nurse noticed me choking and raised the back of my bed so my tongue wouldn’t flop back down my throat. She also told me I just needed to calm down.
An hour later I discharged myself against medical advice and went home and cried. While the illness itself isn’t life-threatening, choking on your own tongue can be. Even now when I feel a seizure coming on, I immediately flip myself onto one side or ask someone to help me do so.
With time I’ve gotten over the choking incident, but in the past few months I’ve been experiencing flashbacks and intrusive thoughts, some of which are related to particularly bad seizures I’ve had. One of the worse ones I had was in my parents' house in Stirling which has a lovely wooden floor that I whacked my head off when I collapsed. Back then the slightest bit of stress would trigger the faulty alarm system in my head, so when I couldn’t work out how to put my dogs' bed back together after it being in the washing machine I collapsed sideways, and my vision went totally black. My Dad found me on the floor after he heard banging (probably my feet hitting off the sofa during the seizure) and helped me upstairs to my bed, where I stayed all the next day with an awful headache. Through chats with my therapist, I’ve linked this incident and many others like it to a common intrusive thought I have about my friends or boyfriend repeatedly smashing my head off a rock. It’s not a pretty thought and it makes me guilty to admit I have thoughts as violent as this, but I can’t help it. It’s difficult to share stuff like this but it shows the full extent of medical trauma, and although my symptoms have subsided (for now) the effects are still there.
Seizures in themselves can be a source of medical trauma, but this creates a sort of vicious cycle. NEAD is caused by a disorder known as Functional Neurological Disorder, or FND, which can be caused by trauma either in your childhood or directly before the onset of symptoms2. Mine started in my third week of Uni after a very rocky start to living away from home. But having the illness itself causes more trauma, which creates stress and worsens symptoms, which creates more trauma and round and round until you’re burnt out. It’s taken a lot of time and an immense amount of work to try and break the cycle, and I don’t think I’m fully there yet, but at the point of writing this I’m three weeks and one day seizure free. My head feels clearer than it has in years, and I finally have the headspace to start therapy and process my feelings surrounding the trauma.
If you think you may have experienced medical trauma, I recommend checking out Mind3 (linked below) which has a great page on general trauma, or the page linked below from the Royal College of Psychiatrists4. You can also contact a GP or mental health nurse, who can then refer you onto your community mental health team. NHS waiting times for mental health support can take a long time, but help is worth waiting for.
Love, Mirren x
(Originally published 15/11/20)