My Rheumatology Appointment: A Patient's Frustrating Reality

A Reflection on My Rheumatology Appointment, Disappointment, and the Exhaustion of Not Being Heard

Hi fam,
I’m so sorry I haven’t been uploading much lately. From a patient’s perspective, the truth is I’ve been sick. Again and again. It started with a horrible headache that landed me in the ER, followed by a hospital stay, and then a string of getting better, only to get sick all over again. Navigating these experiences shows a patient’s perspective can be incredibly exhausting.

It feels like I’m trapped in a spiral, like the moment I find my footing, the ground shifts beneath me.
But today, for the first time in a while, I can sit up, breathe deep, and write. And I want to tell you about my rheumatology appointment yesterday.

I Went in Prepared. I Left Feeling Gutted.

To everyone who follows me on TikTok and Instagram, thank you. You saw my prep. You cheered me on. I felt held by you from a patient’s perspective.

I had everything ready:
• A detailed chart of my symptoms
• Pictures of rashes and swelling
• Graphs of my flare patterns
• Notes comparing my “sick” versus “healthy” states

I was hopeful. Nervous, but hopeful.
And she did run a bunch of bloodwork which is more than many do.
But instead of relief… I left feeling crushed. Confused. Unseen.

When a Diagnosis Feels Premature and Painfully Dismissive

The doctor brought up fibromyalgia.
Now, let me say this loud and clear: Fibromyalgia is real.
I have friends who live with it. I’ve seen its devastation firsthand.

But I also know it’s a diagnosis of exclusion, and my gut tells me this isn’t my answer. It just doesn’t fit.
And to have it brought up in our first meeting, without any discussion of what I brought, felt like a shortcut around my truth.

When Questions Cut Deeper Than They Should

She noticed the scars on my arms. They’re from a car accident; a windshield injury, well-documented in my chart. But she asked if I had been cutting myself.
I told her no, shared my history, even offered to show notes from my neurologist. Still, she pushed.

She talked about how people with fibromyalgia often have depression, anxiety, or adverse childhoods.
I told her that didn’t apply to me.
She asked, “Then why are you on Celexa?”
I explained it was for pain management but she didn’t believe me.
She asked me to explain my entire upbringing.

Then she documented in my chart:
• That I grew up privileged
• That I “denied ever being sad”
• That I was Mormon

I know those details shouldn’t bother me. But they do.
Because they weren’t relevant. They weren’t kind. They weren’t the story I came to tell from a patient’s perspective.

She Never Looked at What I Brought

The chart. The graphs. The symptom logs. The photos.
She never opened them.

She questioned my Vascular Ehlers-Danlos diagnosis and despite genetic confirmation. She told me I was still hypermobile (which, yes, can absolutely coexist with vEDS).
Her words left me feeling like I wasn’t being taken seriously. Like my truth was just too complicated to fit her box.

So Here I Am: Grateful for Labs, But Heartbroken by the Rest

I know I’m not imagining the red rash across my cheeks.
Or the joint pain so severe I can’t get out of bed.
Or the knee that swells to the size of a cantaloupe.
Or the spontaneous miscarriages, all twelve of them.

These things happened.
And just because I show up smiling, in clean clothes, with a little makeup… doesn’t mean I’m okay.

Some days, I carry the pain quietly. Because being dismissed out loud hurts more than the symptoms.

Why Does This Hurt So Much?

I think because this was the appointment.
Every doctor GI, neuro, primary has pointed me to rheumatology.
It’s been 20 years of this. And every time I show up, I either get:
“Your labs are fine. You’re fine.”
Or…
“Your labs are weird, but not weird enough.”

And maybe that’s part of what’s broken in our system.
Doctors don’t have time.
Patients don’t have medical degrees.
And we’re expected to somehow meet in the middle while sick and scared. This shared experience can feel overwhelming from a patient’s perspective.

If You’re Feeling Unsettled Too… You’re Not Alone

I wish I had a beautiful, hopeful update.
But the truth is: I’m sad. I’m tired. And I’m angry.
I wanted a doctor like my primary care doctor or GI doctor, people who see me as human first.

I don’t know what to do next. Do I go back? Do I ask for a second opinion? Do I give up?

This is what it means to live with chronic illness:
To always be doubted.
To always be balancing hope with heartbreak.
To always ask yourself if it’s worth trying again.

But I’ll say this to you and to myself:
It’s okay to be sad.
It’s okay to feel let down.
It’s okay to say, “This hurts.”

You don’t have to be strong every second.
And just because your pain is invisible, doesn’t mean it’s not valid.

I see you. And if you’re walking this path too, I’m walking it with you. 💔

LOVE Catt @thezebranetwork.com

i’ll leave my little video here of it all before I left confused.