Gees! What a ride!

Deep breath… in… out…

Even thinking about this makes me panic.

Fighting for other people has always come naturally. I’ll stand beside them, speak up for them, advocate for them without hesitation.

But fighting for myself? That’s different.

The moment I have to ask for help, my mind fills with fear.

What if they don’t believe me?

What if no one helps?

Will I be ridiculed for speaking up?

Will I be punished for asking?

And buried even deeper is the fear I never say out loud…

What if they take my family away from me? What if they lock me up?

These are the thoughts that race through my already overwhelmed brain whenever I have to admit that I’m not coping. That my brain and my body are failing me.

The strange thing is, cognitively I’m still okay.

I’m slower than I used to be, but I still function reasonably well. When I have enough energy, I genuinely believe I can perform at a higher-than-average level, but not for very long.

Fatigue changes everything.

Stress changes everything.

Anxiety changes everything.

Depression changes everything.

When those things take hold, my brain and body seem to disconnect. Tasks that once took minutes suddenly feel impossible. My thinking slows, my concentration disappears, memory gone, even the simplest jobs become overwhelming.

So even considering the fight for my own health is exhausting.

It drains me to the point where giving up feels easier.

Why bother?

No one understands.

No one listens.

Everyone is busy.

What’s in it for them?

One of the hardest things for me to come to terms with has been realising that something I believed my whole life simply hasn’t been my reality.

I genuinely believed that if I worked hard, paid my taxes, paid my accident insurance levies, and contributed positively to society, then if I was ever seriously injured or became unwell, the support would be there when I needed it.

I believed the system would catch me.

Instead, my experience has been the complete opposite.

Too often I’ve felt like I have to prove that I’m telling the truth. Like I’m viewed as someone looking for a handout rather than someone desperately searching for answers. At times I’ve been left feeling like a burden on society—as though my worth has somehow diminished simply because my injuries are invisible.

That has been one of the most heartbreaking parts of this journey.

Even more difficult has been encountering professionals who, in my experience, have made decisions without fully understanding my history or seeking all of the relevant information. Decisions have been made based on incomplete assessments, and I’ve been left feeling unheard, misunderstood, and without the healthcare or support I believed I would receive.

When you’re already exhausted, having to repeatedly prove your illness or injury feels almost impossible.

For most of my life, I poured my energy into helping everyone else. Now, whatever energy I can find is being spent fighting for my own health—for answers, for improvements, and hopefully, one day, for effective treatment.

What I’m experiencing is apparently considered “rare.”

Yet the more I research, the more convinced I become that my symptoms stem from the head injuries I’ve suffered throughout my life.

So I keep fighting.

I fight when I have the strength.

I lean on others when I don’t.

I allow myself to be vulnerable when I need help.

And I’m incredibly grateful that, despite everything, I still have the ability to advocate for myself.

Sometimes I wonder what it would be like if my cognitive abilities had been affected differently.

If I couldn’t remember who I used to be…

If I didn’t recognise the changes…

Would it hurt less?

I finally understand the saying, “Ignorance is bliss.”

Before all of this, I knew very little about disability. I didn’t understand brain injuries, the invisible deficits they leave behind, or how they can contribute to depression, fatigue, anxiety, and so many other challenges.

I never truly appreciated the ripple effect they have on every part of a person’s life.

Now I do.

And it’s devastating.

It’s heartbreaking.

It’s painful.

Every single day.

I often wonder about the people who can’t fight.

The ones who stop after the first hurdle.

The ones who believe the first uninformed opinion they’re given.

What happens to them?

Do they quietly disappear from the world?

Do they turn to alcohol?

To drugs?

Do they simply lose hope?

I hope I can continue finding the strength to fight—for myself, for better healthcare, and for greater understanding of brain injuries and invisible disabilities.

And if one day my journey allows me to stand beside others and help them fight too…

Then perhaps everything I’ve been through will have served a purpose.

🥷❤️