Proof of Suffering

Content note: chronic illness, medical dismissal, emotional volatility

I’m feeling so fragile these days. Brittle.
I fear I might fracture from the slightest of movements.
Unsubstantial. My body is barely a form.

In 2023, a doctor wrote a note in my chart, “Someone should tell the patient they have mild anemia.” No one told me.

I’ve been crying more than normal lately. And not just sad tears.
I’ve laughed until crying more in the last two months than I perhaps ever have in my life before.
So if you’d like to also be a silly goose, may I recommend reducing your iron intake?

My emotions have been whiplashing me from ecstasy to hopelessness.
My heart has been slamming against my chest attempting to escape every time I get out of bed.
I try to complete a thought but I’m trudging through the muck. And when I do complete a thought, my decisions are impulsive and impossible to track.

The feeling of running on dregs has been real this whole time.
Why does it fill me with glee? It’s real! It’s real! My suffering is real!

There’s a relief in something being wrong enough that you will finally be cared for.

Does anyone else dream of simple explanations?

I feel justified when, for example, I find out I’m severely iron deficient. Versus being diagnosed with hypermobile Ehlers-Danlos or POTS.

The simple are easy for folks to comprehend.
Even if only a doctor really understands the facts.
They’re interpretable. Their grandpa takes meds for that. Their co-worker had that once.

Complex chronic illness is an enigma. You accept being misunderstood. You accept not being believed.
You make up cute little ways to explain your abnormal body to laymen: I’m bendy! My blood doesn’t circulate well!
You expect the doubt. But that doesn’t make it ok.

Why do we need to see something with our eyes to believe it?
Haven’t we yet learned our eyes deceive us?

The medical system is a culture of faithlessness.
They’re suspicious when you ask to be tended to.
Is my performance of illness not enough?
I frown to make sure my face is a face of pain. I slump my shoulders so you can see the fatigue written on my body.

I whimper like an animal caught in a trap.

Now, when I have nothing left to give, all I can do is wait. The doctors still don’t believe me.
So I’ll give my body what it needs and pray it does the rest. My flesh cries out for a savior. My cells fall to their knees at the feet of the iron supplement.

It’s a helpless feeling or it’s a resignation. That’s usually the choice when facing chronic illness.
But even if peace right now is hard won, I will chase it. I will grapple for it. I will try to relax my aching spasming muscles.

This spectral body deserves one person to believe it. And I can be that.