The Truth Behind the Mask: Explaining "Showtiming" to Loved Ones

In my last post, I talked about Imposter Syndrome, the guilt of feeling like a fraud, even when we can sometimes function "normally."

Today, I want to tackle the other side of that coin: how to explain this phenomenon to the people around us.

We call it Showtiming. It’s the reason why I can chat happily at a family barbecue on Sunday afternoon, but can’t work out how to use my coffee machine on Monday morning.

It is confusing for us, but it is often baffling for our friends and family. They see us laughing and engaged, so they assume the disease has paused or that we were exaggerating. Here is how I’ve learned to explain it to them (without getting angry).

The "Adrenaline Credit Card" Analogy

The best way I have found to explain Showtiming is to talk about energy like money.

Most healthy brains have a steady income of energy. They spend it, they sleep, they earn it back.

My brain is different. To function in a high-stimulation environment (like a dinner party or a busy shop), my brain has to spend energy it doesn't actually have. It takes out a loan. I call this the Adrenaline Credit Card.

• The Purchase: During the event, adrenaline and social pressure keep me sharp. I am focused. I am "on." I am spending on credit.
  

• The Interest: The moment I leave that environment, the debt collectors come calling.

When I explain this to friends, I say: "I looked fine yesterday because I was running on adrenaline. But today I am paying the interest with interest."

The Swan Metaphor

If the financial analogy doesn't stick, I use the swan.

On the surface of the water, the swan looks elegant and calm, gliding effortlessly. That is what you see when we are having coffee.

Under the water, those feet are paddling furiously just to stay afloat and moving against the current. That is what my brain is doing. It is rerouting connections, fighting through fog, and suppressing panic just to keep up with the conversation.

Eventually, the swan gets tired.

How to Tell Them (The Scripts)

It can be awkward to bring this up, especially when someone is trying to be nice by saying, "You seem so much better!"

Here are a few phrases I use to gently correct them:

• When they say "But You look fine!" “Thank you. I’m having a good moment right now, but these moments usually come with a 'crash' later. I’m enjoying this while I can."
  

• When they invite you to a long event: "I’d love to come, but I might need to leave early. My brain can only 'showtime' for about an hour before I start to shut down."
  

• When they question your diagnosis based on your behaviour: "What you’re seeing is my brain's ability to sprint. I can sprint for a short time to keep up with you, but I can't run a marathon.

  
  

  The dementia is still there, I’m just working incredibly hard to hide it right now."
  

The "Aftermath" is Private

The hardest part for the family to understand is that they rarely see the aftermath. They see the performance, they go home, and they think everything is fine.

They don't see me sitting in a dark room for two hours afterwards because the noise of the television hurts physically. They don't see the tears of frustration when I can't undo my shoelaces.

My advice: Be honest about the aftermath.

Don't hide the crash. If you trust them, tell them, "I slept for 14 hours after our lunch." It isn't complaining; it is EDUCATING, informing and being honest. For me, the sense of exhilaration and achievement I get from "performing" is well worth the subsequent crash. It's true what they say...

"There's no gain without pain".