This is what I was told by a nurse when I said I know what I need.

With condescending roll of the eyes and smile at her colleague that said. She thinks she's a health professional lol.

I didn't tell them I was this time.

Then she added.

But don't google doctor.

No lady! Only I know my medical condition.

The genetic condition I have had Forever!

The condition you just said you have never heard of.

---

This time I thought I came prepared.

I printed reams of scholarly medical journal articles about my condition, and the best evidence based treatments.

The common comorbidities.

I wrote down my past treatments and history.

I forwarded correspondence

I was determined to make it work.

To use this opportunity.

---

But I didn't factor in one thing.

I was reentering a medical model that does not value a patient. That doesn't place them at the centre of their own health care.

Does not consider me the expert on what it feels like to live in this skin.

Does not give credence to my knowledge, and ability as a reliable historian.

That judged me as a chronic deviant lingering benevolent creature.

That never asked me about me, but told me.

Told me fucking wrong and stupid and dangerous things.

Things that they could have a go at.

They weren't prepared to have a go at anything that actually has evidence to be useful in the past for people with my condition.

But what the Fuck would I know.

I am not the one that needs to spend time googling lady.

I know about my, not so fucking rare condition.

But misunderstood, mismanaged and mistreated.

---

So I cried in the empty hallway on the phone to my husband at 1am.

No one noticed, or if they did they didn't care.

It is now 330 am.

I am waiting for sun rise.

Then I will go home. Before these arrogant people harm my body like the last geniuses.

Thanks Tracy for the tune.

---

So I suppose this wasn't my last chance after all.

Because I still can take a breath.
While there is breath there is still life.
While there is life there is possibility.
While there is possibility there is hope.
Because there is no choice.

Not a satisfactory one anyway.

---

I have realised one important thing today.

I will never again work in a system that pretends to care and heal. A system that has repeatedly stripped me of my dignity, my choices and deprived me of access to appropriate interventions.

That has tried but failed to rob me of my very soul.