Blog Series - Becoming Your Own Advocate

There is something that happens when you live with chronic illness for long enough.

You become tired of explaining.

Tired of appointments.
Tired of tests.
Tired of repeating your story to another person who has only just met you.

And sometimes, the hardest part isn't even the pain.

It's fighting to be believed.

Because when you live in a body that doesn't always make sense to other people, you can spend years trying to convince someone that what you're experiencing is real.

And that can break you in ways nobody sees.

Fighting to Be Heard

There is a particular kind of exhaustion that comes from saying:

“Something isn't right.”

And hearing:

“Your tests are normal.”

“It's probably stress.”

“Maybe it's anxiety.”

“There's nothing we can find.”

But you know your body.

You know when something has changed.

You know when the pain isn't normal.

You know when you're experiencing something you've never experienced before.

And yet, sometimes you find yourself sitting across from someone in a medical room wondering whether you need to somehow prove that you're sick enough to deserve help.

That is exhausting.

Because you're not only dealing with the illness.

You're fighting to be seen.

You're fighting to be heard.

You're fighting to have someone take you seriously.

And after enough dismissal, you can start doubting yourself.

Maybe I'm overreacting.

Maybe I'm imagining it.

Maybe everyone thinks I'm making a big deal out of nothing.

And that is where self-advocacy becomes so important.

Because eventually you have to say:

“I know my body. Something isn't right. I'm not going to ignore that anymore.”

Medical Gaslighting

Medical gaslighting isn't always someone deliberately trying to dismiss you.

Sometimes it's subtle.

It's the repeated suggestion that your symptoms are exaggerated, psychological, unrelated or simply something you need to learn to live with.

It's being told:

“There's nothing wrong.”

When you know there is.

Learning to Ask Questions

I had to learn that I am allowed to ask questions about my own body.

I am allowed to say:

“What does that actually mean?”

“What are we ruling out?”

“What else could be causing this?”

“What happens if this treatment doesn't work?”

“What are my options?”

“What's the next step?”

And if I don't understand the answer?

I ask again.

And most importantly, I've learned to listen to myself.

Because nobody else is inside this body twenty-four hours a day.

I am.

Refusing to Settle Until You Find Answers

This doesn't mean believing every possibility you find online.

It doesn't mean assuming the worst.

And it doesn't mean fighting every healthcare professional.

It means refusing to completely abandon yourself.

And sometimes you have to keep going even when you're absolutely fucking exhausted.

But Becoming Your Own Advocate Isn't About Fighting All the Time

This is something else I've had to learn.

Self-advocacy doesn't mean living permanently in battle mode.

Because chronic illness can already take enough from you.

You don't need to spend every waking moment fighting.

Sometimes advocacy looks like speaking up.

Sometimes it looks like resting.

Sometimes it looks like taking someone with you to an appointment because you're too exhausted to carry the conversation alone.

Sometimes it looks like saying no.

Sometimes it looks like getting another opinion.

Sometimes it looks like accepting help.

And sometimes it looks like saying:

“I believe myself.”

That might be the biggest act of advocacy of all.