*trigger warnings for bad hospital experiences and death*
I've spent over a year fighting and I'm tired.
I've been fighting for adequate medical care and a diagnosis. I've been fighting to stop prejudice and diagnostic overshadowing getting in the way of that happening. I've been fighting for acceptance and support from friends and family. I fought for my own home when I was homeless. I'm fighting for adequate social care.
I've spent so much time fighting that I've not had so much time to accept the fact that this is utterly, utterly shit.
Today I got home from hospital. I was in for 4 weeks. I should have been in for 2 days but they had a legal obligation to keep me in as it was unsafe for me to go
home without care.
It's important to note that some of the nurses were respectful and helpful although many were easily influenced by my social worker's lies.
But....
In the time that I was in hospital:
- A social worker told lies about me resulting in the breaking down of communication between nurses, doctors and myself. I was treated as a fraud.
- I was consistently misgendered including someone writing a female name on my records for no apparent reason. I had my validity in a male ward questioned.
- My transgender status was initially more interesting than my acute health needs to both doctors and nurses. Later, undue emphasis was put on this.
- I was treated as a fraud and a bed hogger.
- My notes now contain suggestions of psychiatric, psychological and somotisation issues.
- My neurology appointment was a complete waste of time as he didn't listen to all my symptoms so focussed only on my walking problems concluding they are rehabable. Despite running tests I'm not seeing him again as "I think you've seen quite enough neurologists already".
- I was made to feel degraded about accessing help including a nurse having a heated argument with me about how I was lying/exaggerating about what I need help with whilst we were in a tiny shower room.
- I had to wait 13 hours to empty my bladder as the hospital had no non silicone catheters and I hadn't anticipated staying in at all.
- Staff took long periods to attend to buzzers.
- Staff could have been a lot more discreet when dealing personal care
- New health needs I presented with were largely ignored including an acute attack of abdominal pain and vomiting + severe bladder pain post catheterisation. A doc suggested just pushing on my bladder instead of cathing....
I need to mention this because it has affected me but need to clarify I'm not suggesting any negligence but:
- 2 people died. 1 of which I saw vomit large amounts of blood and had to call a nurse.
Let's just say I'm happy to have a counselling session booked for next week.
