This is my experience and personal take on my very first appointment with an FND psychologist.
As we talked about my brain injury, I found myself reflecting on the emotional impact, the confronting experiences, and the realisation that so many things no longer worked the way they used to.
There’s a particular kind of grief that comes with trying to navigate everyday life with a brain that struggles to function as it once did.
The embarrassment (sometimes downright mortification!) of memory loss.
The slurred speech.
The inability to finish a conversation or find the words I need.
The shame of feeling “stupid” when I know I’m not.
The pain and exhaustion that can come from everyday tasks.
The loss of my working capacity and independence.
Repeating myself because I genuinely can’t remember what I’ve already said.
And the constant battle with energy, concentration and a brain that simply doesn’t cooperate the way it used to.
But it wasn’t just the changes to my thinking, memory and speech that made this experience so difficult. The physical changes were frightening in their own right.
Vision loss, visual disturbances and changes to my hearing added another layer of fear to an already overwhelming experience.
Imagine trying to make sense of what is happening when the world around you no longer looks or sounds the way it should. When your vision is affected or your hearing changes, even navigating familiar surroundings can become challenging.
These are senses we rely on to understand our environment and feel safe. When they change alongside our ability to think, remember and communicate, it can feel as though the foundations of everyday life have shifted beneath us.
For me, this wasn’t simply about learning to cope with a few symptoms. It was about adapting to a life that had changed in ways I couldn’t have anticipated.
Our brains are trying to protect us
Our brains learn patterns. They use past experiences to recognise potential danger and help protect us from it.
My understanding from this first appointment is that, after everything I’ve experienced, my brain may have learned to automatically switch into high-alert mode.
When you’ve repeatedly experienced situations that leave you feeling vulnerable, embarrassed, overwhelmed or unsafe, it makes sense that your brain and body might become more alert to the possibility of those experiences happening again.
For the first time, in YEARS!!!!!…. I began to consider that perhaps my reactions weren’t as unreasonable as I’d sometimes believed. I stop blaming my brain and body…. They are only performing tasks they are supposed to, to keep me safe!!!!
Perhaps my brain and body have been responding in ways that make sense in the context of everything I’ve experienced.
That doesn’t make the symptoms any less real, but it offers a different perspective.
Instead of constantly asking myself, What’s wrong with me? Why can’t I just do what I used to do? Why can’t I control this? perhaps I can start asking, What is happening in my brain and body, and how can I help them?
Losing trust in myself
Somewhere along this journey, I lost trust in myself.
I stopped trusting my memory because I couldn’t rely on it.
I stopped trusting my body because it would react in ways I couldn’t predict or understand.
My vision, my hearing, my taste, my smell……. Nothing worked the way it should, so I didn’t trust it….
I even began to question my own experiences, doubting what my brain and body were telling me because I couldn’t always explain or make sense of them.
When you struggle to trust your memory, your physical responses or your ability to get through an ordinary day, it affects far more than your symptoms. It changes how you see yourself and how confidently you move through the world.
With changes to my vision and hearing added to the mix, I felt increasingly disconnected from the things I had once relied on.
I found myself second-guessing my abilities, trying to push through limitations and searching for ways to manage my symptoms so I could keep going.
And this is something I’ve started to think about.
Could trying to silence my symptoms, rather than understanding what was happening, have unintentionally reinforced the sense of danger my brain was already experiencing?
I don’t know whether that has been the case for me, but it’s a question I want to explore.
I don’t mean that medication was wrong or that treating symptoms was a mistake. I’ve been trying to function and get through each day using the support and tools available to me at that time.
But perhaps there’s more to understand about the relationship between my brain, my body, my symptoms and the way I’ve learned to respond to them.
Perhaps understanding that relationship now, can help me begin to rebuild something I’ve lost along the way: trust in myself.
When protection becomes part of the problem
What happens when a protective response starts showing up everywhere?
When appointments, conversations, unfamiliar situations, changes to routine or even the thought of doing something difficult trigger that feeling of alarm?
What happens when your brain is trying so hard to protect you that it makes everyday life even harder?
It can become a cycle in which the anticipation of symptoms adds another layer of difficulty to an already challenging situation.
After living this way for so long, it’s easy to lose sight of the possibility that things could be different.
But perhaps recognising this pattern is the beginning of understanding how to approach things differently.
Is there hope?
This is perhaps the most important thing I’ve taken away from day one.
Since my brain injury, I’ve been trying to understand the changes to my abilities, the loss of function and the impact these have had on my life.
The discovery of FND has brought new questions, but this appointment has also opened up a different possibility.
What if understanding what’s happening is the beginning of finding a way forward?
What if I can gradually learn to recognise these responses, develop strategies to manage them and work towards feeling safer and more confident in my own body?
What if I can begin to trust myself again, rather than constantly questioning my abilities?
I’m not expecting an overnight fix. I know that rebuilding confidence and adapting to life with FND will take time, patience and support.
But I’m allowing myself to consider that there may be hope.
Not necessarily a return to exactly who I was before my injury, but perhaps a way to regain some independence, confidence and a sense of normality.
A life where I don’t feel constantly on guard.
A life where I can better understand my body’s responses without automatically fearing them.
A life where I can begin to trust myself again.
A life where I’m doing more than simply getting through each day.
Day one. A new perspective.
I came away from this first appointment with plenty to think about, but also with a different way of looking at my experiences.
Perhaps the question isn’t simply how I stop my brain from malfunctioning.
Perhaps it’s how I learn to work with my brain and body, understand what’s happening and gradually rebuild a sense of safety and trust.
Could this be the beginning of finding my way back to some sense of normality?
I’m hopeful that it might be.
For now, I’m taking it one step at a time.
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