"I feel ignored like it's not my body"

I am a sickle cell patient and for what ever reason whenever I have been for an admission I have felt ignored like it's not my body. I come in with a crisis only to be told it's not a crisis and then my care is lacking. I have been told excuse after excuse about a  breakdown in communication and I feel completely unheard. I have felt patronised by my haematologist. They have not listened. They have put a cannula in and left it in for a week. They have reduced my medication even if I stay at a 8. They have treated me like I am just searching for drugs.

There is nothing I can do when I reach this level of pain except tell you how I feel and the care I need. Why is my age a factor? I have had sickle cell my whole life and will continue to have sickle cell. I have felt pressured into decisions I don't agree with and blamed for having a crisis. I should not be blamed. I should be able to ask for a change in my protocol. I should be believed. My experience should not be compared to anybody else. I should never feel like the people I am entrusting with my health and safety are judging me and that they hate me. I just want to feel seen and heard. I want the basic sickle cell protocols to be followed.

When I come to the hospital it means I have reached a level where I am unable to care for myself. I don't come for fun, I don't want to be here. I am sick. I need help.

A crisis needs to be treated as such even if staff believe it is not. It is not happening to staff so they don't know what it feels like for me. I want to have a good standard of care. It is not an easy journey and no crisis is the same. Believe me when I say what is happening. Everything hurts and I want it to stop. Pain relief is the minimum for a crisis since there is nothing else I can do. Something needs to change.