The Fraud in the Mirror: Living with Dementia and Imposter Syndrome

I remember the day I got my diagnosis vividly. I sat in the neurologist's office, clutching my partner’s hand, listening to words that felt too big and too heavy for a person my age...

Young-Onset Dementia.

But then, I walked out to the car. I unlocked the door. I drove home. I made dinner. And a quiet, insidious thought crept in: Are they sure? I don’t feel like I have dementia. Maybe I’m making this up.

We talk a lot about the grief and the confusion of this disease, but we rarely talk about the Imposter Syndrome. It is the strange, disorienting feeling that you aren’t "sick enough" to claim the label, or worse, that you are somehow faking the whole thing.

The "But You Look So Well" Trap

If I had a pound for every time someone said, "But you look so well!" or, “You don’t look like you’ve got dementia,” I could fund my own research cure.

When you live with Young Onset Dementia (YOD), you don't fit the stereotype. I am not frail. I am not grey (well, not VERY grey). I don't shuffle when I walk. On a Tuesday morning, you might see me laughing at a coffee shop or navigating a supermarket aisle with apparent ease.

This creates a disconnect. My outside shell looks perfectly intact, while the wiring inside is fraying. When the world reflects back to you that you seem "normal," it is easy to gaslight yourself. You start thinking:

• Maybe I’m just lazy.

• Maybe I’m just not trying hard enough to concentrate.

• Maybe I’m just stressed.
  

You start to feel like a fraud for using your disabled badge or asking for help, because you can’t see the broken parts yourself.

The Phenomenon of "Showtiming"

There is a technical reason for this feeling, and learning about it changed my life. It is called Showtiming.

Showtiming is our brain’s ability to pull it together for a short burst of time. When we are in a social situation, high on adrenaline or anxiety, our brains can bypass the damaged areas temporarily. We can hold a conversation, crack a joke, and appear completely lucid.

But what people don't see is the cost.

The Crash: Showtiming borrows energy from tomorrow. After a one-hour lunch where I seemed "fine," I might go home and be unable to speak or function for the rest of the day.

Because the observer only sees the performance (and not the backstage collapse), they assume we are fine. And because we want so desperately to be fine, we believe them.

The Fluctuating Nature of the Fog

Another driver of Imposter Syndrome is that dementia is not a straight line down; it is a rollercoaster.

Some days, the fog lifts. I can remember names. I can plan a meal. I feel like my old self. On those days, the Imposter Syndrome screams the loudest. I think, “See? I can do this. The doctors were wrong.”

Then, the next day hits. I stare at the microwave, unable to comprehend the buttons. I get lost in my own hallway. The fluctuation is confusing. It makes you doubt your own reality.

Dealing with the Guilt

Ultimately, Imposter Syndrome in dementia stems from persistent feelings of guilt and self-doubt - questioning your right to your diagnosis and experience.

• Guilt that we aren't suffering as much as others in the later stages.

• Guilt that we are burdening our families when we physically look capable.

• Guilt for having "good days."
  

If you are reading this and have moments of feeling like a fraud, remember: Imposter Syndrome is a common part of living with dementia. You are not faking it.

Dementia is invisible, it is fluctuating, and it is exhausting. The fact that you can still smile, laugh, and have moments of clarity does not negate your diagnosis. It just means you are still you, fighting to stay present.

Cherish the good days, but don't let them convince you that your struggle isn't real. It is real.

And you are doing an incredible job navigating it.