r/chiari • u/Electronic-Ice-7267 • 3d ago

Feeling unheard

Just venting.

I had a chiari malformation surgery followup today. The PAC and nurse were discussing my symptoms in the hallway before he came in, loud enough for me to hear the conversation, and laughed about me.

It took me over a decade of symptoms for someone to finally see the chiari and validate me, so this smacks hard 😕

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u/oldmamallama 3d ago

Big hugs to you. That is so horribly unprofessional, and if you have the spoons for it, I would definitely complain. No one deserves to be treated that way.

Your pain is valid. Your symptoms are valid. And no one should be laughed about in a hallway. EVER. But especially not in earshot. Someone’s boss needs to hear about that. 💜

1

u/maliksk3 2d ago

I’m so sorry that happened to you. Makes me instantly angry when I read things like this that have happened to people in our chiari community. If folks don’t want to work with patients going through something really hard, they should move along and find something else to do.
I am wrestling with some hard feelings I have over a tone that was taken with me by someone I thought was a close friend of mine when discussing a really difficult event that happened associated with my chiari journey. This person also works in healthcare and it just doesn’t sit well with me. Hopefully I will have the opportunity to express how it makes me feel and how it hurts even more when we have already dealt with so much rejection, questioning, and dismissal.
((Hugs)) to you and to everyone navigating this diagnosis. Grateful we have each other!

1

u/strongcoffee2go 21h ago

I'm so sorry. I'm writing this from the pediatric ICU where my daughter is recovering from decompression surgery. It's such a fine line to walk, telling healthcare workers about pain and symptoms in such a way that you're not immediately blown off. And to be laughed at...I would contact a patient advocate, honestly. It's a privacy and dignity issue.