For many people living with functional neurological disorder (FND), there is a question that often lingers quietly in the background: “Why is this happening to my body when scans say everything is normal?” For others with PTSD, the question is just as confusing: “Why does my body still react as if the danger is happening now, even when I know I’m safe?”
When I was diagnosed with FND I found myself pondering these questions often and I’d come back to feeling as though in some way it must be my fault. “Why can’t I just move forward?” or even “Is this just all in my head?” I’d swing between hope and terror; hope that there must be a way to get better (I knew we could influence our nervous system from my years of teaching Psychology), and terror, will I be this way forever? If Dr’s didn’t have answers how could I find them? With no other option, I began to search high and low, I needed to know what was happening and why. I hope by connecting the dots, things begin to make more sense for you and that you too will feel hope instead of confusion.
PTSD otherwise known as Post traumatic stress disorder is often related to a one off traumatic event. Such as accidents or medical trauma, abuse (physical, emotional, sexual), sudden loss or grief, violence or witnessing harm, long term stress where someone felt powerless. CPTSD on the other hand also known as Complex post traumatic disorder develops when someone has been exposed to ongoing long term repeated trauma. Often during key developmental years. Living in a high conflict, chaotic household for example, can leave an imprint on a child’s nervous system that they then unconsciously carry into adult hood. The nervous system may have got used to operating ‘on edge’ in a hypervigilant state. This can look like listening to the tone of voice from our caregivers to try to predict moods. As adults we may then fall into hypervigilance in the work place particularly if we feel uneasy and also in relationships and friendships.
FND, PTSD and CPTSD are deeply connected to a dysregulated nervous system. Dysregulation isn’t about when we get angry, stressed or shutdown/freeze. It about when we get stuck in either hyperarousal (fight or flight) scanning our environment for threat, ruminating about social interactions, the feeling of being constantly on edge – the amber zone. Or remaining in hypo arousal (shutdown or freeze) here we experience numbness, exhaustion immobilization, foggy, like we aren’t in our body (dissociation) and may experience being in a vegetative state – the red zone. In my experience for many of us with FND we may have experienced a traumatic event or a series of stressful events that put us into the Amber or Red zone and cue the FND symptoms arise. Our bodies are designed to prioritise our survival and so all of this is occurring on a subconscious level. What you are experiencing is in no way your fault.
We can come out of being stuck in the Amber or Red zone and into green. The green zone is where we experience safety, joy, peace and ease in life. Where you can start is by having a go to practice of nervous system regulating techniques. Safety comes before energy and before recovery. The second phase of recovery is to neutralize past trauma; this is best done with a professional (experienced in EDMR) or myself within my ‘Reset & R.I.S.E’ program.
Why do we get stuck?
Our brains are great at creating short cuts and predicting. Within our brains are neural pathways, when we have a thought the pathways activate. When we repeatedly think the same thought overtime this pathway gets well established. However if we have a history of trauma our pathways engage our threat center, the amygdala and now the shortcut is no longer beneficial to us; as our hormones adrenaline and cortisol are released continuously which affect our other bodily functions. Our immune system is suppressed, our digestive system becomes disordered as our food is no longer able to be digested properly – our energy is being taken to handle threat. We may also experience sleep disturbance with our circadian rhythms out of balance. This is to name just a few of our bodily processes that become impaired.
As humans we aren’t designed to remain on high alert for long periods of time, once the adrenals experience depletion we experience the next phase of shutdown and immobilization (we can also swing between the two zones amber and red).
However the great news is due to something known as neuroplasticity, which means the pathways of neural connections in the brain are not permanent and can therefore change. Our brain is adaptable and so it doesn’t matter how long you have experienced the symptoms for, you can also experience change. We can experience safety, sustained energy and peace again.
Next Steps
This is why both our brain aka the encoder and our autonomic nervous system ANS combined with self-compassion allows for change and recovery to be possible. Start today by speaking kindly to yourself. You have already been through so much, you deserve the love you give to others - so start giving it to yourself! Find ways to soothe yourself; you may try the ‘havening technique’ or tactile comforts such as your favourite blanket, or a warm drink (tactile comforts matter physiologically). Take your full awareness to the present, and begin to notice people and places where you feel safe.
If this blog resonated with you, I’d love to know; feel free to reach out