I want to do this too.
"I explained I had symptoms X, Y, Z. I said I wanted to be tested for condition A as they are all classic symptoms. You said I didn't have condition A and didn't test for it. I've since been diagnosed with condition A. Listen to your patients. Sometimes we know more than you."

Thank you 💜

(That is my "I come in peace" sunflower btw 😆 I just created it, but that was the sentiment - I appreciate your comments and spreading the word, and especially since you have ME too and I know the energy it can take to write multi-post comments 💜)

Oh, in the list, those are three different options: complex, invisible or rare. Not three different ways to describe the one set of conditions.

I was referring to conditions that really are rare - people who have them face a lot of disbelief and have a really difficult time getting a diagnosis. 🌻

But I am definitely with you that conditions are never really invisible and 'complex' is really not a helpful word to mean 'multi-systemic'.

I like medically neglected. Also, multi-systemic rather than complex.

I think of the terms as "too complex for your average physician, who doesn't want to learn" and "invisible to your average physician, who doesn't want to look"

- people who have visible tattoos, alternative-style piercings and hairstyles, or dress alternatively (i.e. "the blue hair sign")

Oh, here's a wild one:

- other healthcare workers

Great additions, thank you 💜

I'm so sorry about the way you found out your cervix was removed in the hysterectomy. It's not okay. 💜

I'm in the Trying Again stage after 3 years of refusing to see docs. I'm only seeing "patient-approved" ones who know my conditions, hoping it'll be different. Ugh god I hope it'll be different.

I really feel you on this. 💜
Tried shaking the stick, arm got too sore.
I'm tired too, and so disillusioned and disgusted at healthcare.

They sighed and said they'd have to fit me in. Then the person doing the ultrasound rushed through it and it was like she didn't try at all. She said that all the problem things I was getting the scan to check on had 'gone away' but I think it was more that she just wanted me to go away.

Wow that is awful. I'm sorry that happened to you.

I once showed up for a scan which I'd changed the date of on the phone. The receptionist must not have recorded it properly because when I arrived, they said they had no record of my appointment and treated me as if I was deliberately making it up

After asking to finish speaking, he suddenly refused to examine me and wrote a referral that would not be taken seriously by anyone. "She worries she has cancer" - but didn't include any of the red flag symptoms or signs.

He tried to not let me see the referral and then he refused to change it.

Here's the most recent retaliation:

I needed an urgent biopsy. My GP was away so I had to see a random. I wrote a few sentences beforehand to read out to describe symptoms etc. He interrupted me before I could finish, and I just asked for him to let me finish.

Wow that's so bad.

My endo suddenly became uncontactable after he'd given me the wrong prescription. I have adrenal insufficiency and could have died from the medication suddenly disappearing. I think it was the pharmacy that saved me, can't remember - I got really sick. I just know it wasn't him.

Omg I learned some ABA to tutor someone through their exam in it a few years ago. My mind was blown by the things it was teaching people. It thinks it's scientific but it's not.

I might do a thread on it sometime just to expel the rage from my body - this thing that calls itself science argh

Wow yeah, this really speaks to the power imbalance between you as a patient and that nurse. You're literally at her mercy.

There's a quote I always think of when it comes to clinicians and the power they have over us.

I explained to this cardio that in #hPOTS -the condition I was asking him to consider- your BP rises along with your heart rate when you stand.
So then he suddenly decided I don't need that referral he was going to write me, to test for it. Refused to explain, just "I've decided you don't need it."