Two Experts Come Into a Treatment Room...

It sounds like the beginning of a joke.

But I think it's actually the beginning of better healthcare.

One expert has spent years studying medicine.

The other has spent years living in their body.

Good healthcare needs both kinds of expertise.

The challenge is that nobody teaches us how to become a patient.

The Hidden Curriculum

The first time you come into a healthcare appointment, you probably think the hard part is figuring out what's wrong.

You describe your symptoms.

Answer a few questions.

Listen to what the healthcare professional has to say.

Simple enough.

Except it rarely feels that simple.

After enough appointments, something else begins to happen.

You don't just learn about your health.

You learn how to be a patient.

Experience becomes the teacher.

No one hands you a guidebook.

Instead, you slowly absorb the unwritten rules.

Keep your story concise.

Don't forget anything important.

Bring notes.

But don't rely on them too much.

Ask questions.

But don't ask so many that you seem difficult.

Be honest.

But don't sound dramatic.

Stay calm.

But not so calm that people underestimate what you're experiencing.

Eventually, you're no longer just telling your story.

You're thinking about how your story will be received.

The Script

Over time, many people develop something they never intended to have.

A script.

You learn what to say first.

What to leave out.

Which questions can probably wait.

If you've explained the same history dozens—or hundreds—of times, of course it begins to sound rehearsed.

Not because it isn't real.

Because you know it by heart.

We Assume It Gets Easier

There's an assumption we rarely question.

That the longer you've been navigating the healthcare system...

the easier it becomes.

Sometimes it does.

But not always.

Sometimes every appointment comes with the memory of the last one.

The impact of the symptom that was dismissed.

The concern you wish you'd pushed a little harder on.

The moment you got back to your car and thought,

"I should have said no."

Experience doesn't always build confidence.

Sometimes it builds caution.

Sometimes you rehearse setting boundaries before the appointment.

"I'd like to think about that first."

"I'm not comfortable with that treatment plan."

"Can you explain why you think that's the best option?"

At home, those words feel completely reasonable.

Then you get into the room.

The conversation is no longer imaginary.

Somehow...they don't feel quite so easy to say anymore.

You start wondering whether you're being difficult.

Whether you've misunderstood.

Whether saying no will change the rest of the appointment or your relationship.

You haven't forgotten your boundary.

The room has changed how safe it feels to hold onto it.

And sometimes people begin asking themselves a heartbreaking question.

"Why do I seem to be getting worse at this?"

They're not getting worse.

They're carrying more.

The Invisible Work

One of the hardest parts of navigating healthcare isn't always explaining what's happening.

It's deciding how to explain it.

Should you sound emotional?

Or will that make people think anxiety is the problem?

Should you stay calm?

Or will they underestimate your pain?

Should you bring notes?

Or will your story sound rehearsed?

This is work.

Invisible work.

A Different Way of Thinking About Advocacy

People often say,

"You need to advocate for yourself."

It's well-intentioned advice.

But before we talk about advocacy, I think we need to ask a different question.

What has the healthcare system been teaching you about using your voice?

If your experiences have taught you that speaking up is risky...

or disagreeing feels unsafe...then advocacy isn't simply a communication skill.

It's something that may no longer feel safe.

A Disability-Affirmative Perspective

One of the principles that guides my work is this:

Every client is the expert in their own lived experience.

I've been thinking about how that applies to healthcare too.

Healthcare professionals bring clinical expertise.

Patients bring lived expertise.

Those are different kinds of expertise.

The best healthcare depends on both.

But if repeated healthcare experiences teach someone to second-guess their own observations...to minimize symptoms...or to assume that their understanding of their own body matters less than everyone else's...something important begins to happen.

They don't just lose confidence in speaking up.

They begin losing confidence in what they know.

Because advocacy isn't only about knowing your boundaries.

It's about feeling safe enough to maintain them in an environment where the power dynamic can make you question yourself.

Two Experts

Nobody teaches us how to become patients.

Experience does.

Sometimes it teaches us how to navigate healthcare.

Sometimes it teaches us to question our own voice.

Perhaps that's why health advocacy isn't simply about learning to speak up.

Sometimes it's about rebuilding trust in your own lived expertise.

Because the person sitting across from you may be the expert in medicine.

But you are still the expert in living in your body.

The best healthcare doesn't happen because only one expert is heard.

It happens when both kinds of expertise have a place in the conversation.

If you're looking for disability-affirmative therapy in BC, I provide virtual counselling for teens and adults with physical disabilities, chronic illness, medical trauma, and advocacy fatigue. Learn more about Disability-Affirmative Therapy