When Illness Isn’t Visible

When people find out that I have a brain injury, they’re often surprised.
And I understand why.

Because they see me when I show up.
They see me having a conversation. Working. Sitting in court. Facilitating a group. Spending time with my family. Going out for dinner. Cleaning my house. Laughing with friends. Writing. Creating. Problem-solving. Connecting with people. Living my life.

They see me functioning.
And sometimes, I can function really fucking well.

That’s one of the strange things I’ve been thinking about lately when it comes to living with brain injury.
My potential and my capacity are not the same thing.

I don’t know if that’s the technically correct way to describe it. I’m not trying to give a clinical explanation of brain injury here. I’m trying to explain what living inside mine feels like.

Because I don’t think my brain injury means that I can only show up as 75% of myself.
I can show up at 100%.
I can access my intelligence, my education, my experience, my humour, my compassion, my intuition, my ability to communicate and connect with people.
I can be completely myself.

The difference is that I can’t necessarily sustain that level of functioning for as long as I used to.

I can still access my potential. My capacity to sustain it has changed.
My Tank Is Smaller Now
The easiest way I can explain it is that my tank is smaller.
Imagine that functioning throughout your day requires fuel.
Getting dressed takes some.
Driving takes some.
Working takes some.
Conversations take some.
Computer screens take some.
Making decisions takes some.
Noise takes some.
Being in a busy environment takes some.
Cooking dinner takes some.
Cleaning your house takes some.
Being emotionally present for the people you love takes some.
Everything draws from the same tank.

Before my brain injury, I had a much bigger tank.
I could work and drive and come home and make dinner and deal with whatever was happening with my kids and clean something and have a conversation with my husband and maybe still have enough left to do something simply because I wanted to.

That isn’t always how my brain works anymore.

I can still put a tremendous amount of fuel toward something.
I can show up at work and give you everything I have.
I can show up for my family and be completely present.
I can go out and laugh and have a wonderful time.
And if that’s when you happen to see me, you may have absolutely no idea that I live with a brain injury.

But you don’t necessarily see what happens when the tank is empty…
Sometimes I Can’t Open a Candy Wrapper
And I mean that literally.
There have been times when I have been so neurologically depleted that I have struggled to open a candy wrapper.

Think about how little thought most of us give to doing something like that.
You pick it up.
Your brain understands what it is.
Your hands know what to do.
You open it.
You don’t consciously work through the steps.

There are times when I can know that I need to open the wrapper but struggle to figure out how to make that happen.
Maybe I know what my hands are supposed to do, but I can’t seem to make them do it.
Maybe my hands are moving, but my brain can’t properly sequence what needs to happen next.
Something incredibly simple suddenly isn’t simple anymore.

And this can be the same person who, hours earlier, was sitting in court, participating in a professional meeting or supporting someone else through something complicated.

Both versions of me are real.

That’s the part of invisible illness that can be difficult to explain.
You Usually See Me Before the Crash

Most people don’t see me when my brain stops cooperating.
They don’t see me crashed on the couch at 3:30 in the afternoon, barely able to keep my eyes open.
They don’t see the days when conversation becomes too much.
They don’t see me lying quietly because light, sound, movement or another piece of information feels like one thing too many.
They don’t necessarily see what happens after I have spent hours functioning at a high level.

They saw me earlier.
And earlier, I looked fine.
More than fine.
I might have looked completely capable.
Because I was.

Being capable of doing something and having the capacity to keep doing it are not the same thing.
I think that’s something we misunderstand about invisible illness sometimes.

We see someone do something once and assume that means they can do it consistently.
We see someone functioning well for an hour and assume that’s how they function for the entire day.
We see the output.
We don’t see the cost.

I Am Still Learning the Cost
Returning to work has made this much more visible to me.
For a long time, my life had naturally become structured around my brain injury. I wasn’t necessarily thinking about every accommodation I had made because many of them had simply become my life.
I could rest when I needed to.
I could move things around.
I could decide that something wasn’t getting done that day.
I could recover after something demanding.

Going back to work changed the equation.
Now there are things that need to happen at particular times.
There are meetings.
There is court.
There are groups.
There are people depending on me.
There are days when I need to drive somewhere whether my brain thinks driving sounds like a fantastic idea that morning or not.

And suddenly I am learning about my capacity all over again.

Not because I have gone backward.
Because I’m asking more of myself.

I’m learning what different activities cost me.
I’m learning which things drain the tank quickly.
I’m learning what helps refill it.
I’m learning that sometimes I need to stop before I feel completely depleted because by the time my brain is screaming at me, I’ve already gone too far.

And I am learning something that is surprisingly difficult for me:
Just because I can do something doesn’t necessarily mean I should do it right now.

Capacity Is Not Character
I think this may be one of the hardest lessons.
Because when you’ve spent your life being capable, losing capacity can feel personal.

You start measuring yourself against the person you used to be.
I should be able to do this.
I used to be able to do this.
Why can’t I just push through?

And believe me, I can push through… I have spent a significant portion of my life becoming exceptionally good at pushing through.

But pushing through doesn’t magically create more neurological capacity.
Sometimes it just means borrowing from later.
And eventually, later arrives.

I’m trying to learn that my capacity isn’t a measure of my worth.
It isn’t a measure of my intelligence.
It isn’t a measure of how hard I’m trying.
And it certainly isn’t proof that I’m lazy, weak or incapable.

It’s information…
My body and brain are constantly giving me information about what they have available.

My job now is to actually listen.

There Is More to My Life Than What You See
This is one of the reasons invisible illness is so complicated.
You may meet someone during the hour when they have access to everything they need.
You may see them working, parenting, laughing, travelling, creating, exercising or participating fully in their life.
And you may think:
They seem fine.
Maybe they are fine in that moment.
That doesn’t tell you what it took to get there.
It doesn’t tell you what they had to give up to make room for it.
And it doesn’t tell you what happens afterward.

I’m still learning what living well with my brain injury looks like.

I don’t want to build a life around everything I can’t do.
I also don’t want to build one that requires me to constantly pretend I have a bigger tank than I actually do.
I want to use what I have well.
I want to keep building capacity where I can.
I want to rest without treating rest like something I have to earn.
I want to notice the signals before my body has to scream.

And I want to continue showing up fully for the things that matter to me without repeatedly emptying myself to do it.
Because when you see me showing up at 100%, you really are seeing me at 100%.
You’re just not seeing the size of the tank I had to draw from to get there.

A Question for Reflection
What might change if you stopped asking, “Can I do this?” and started asking, “What will it cost me to do this?”