Abigail:
Thank you for this comment. I try to be vocal in a way that isn’t raging so I don’t get dismissed. It’s not easy and it’s especially hard when alone, not dressed, in pain, etc.
But I also think it’s important to help providers understand our experiences at the hospital, during visits, and also at home. And I like and learn when providers share with me and we can have a conversation. That is also powerful. Today, I was talking to the oncology nurse about how the “Hazardous Drug” bags are a little disconcerting to see when they are the drug that gets injected and is supposed to help and when it goes directly in our arms and the nurses are gowned, gloved, and double-masked. The nurse told me, if there’s an allergic reaction, it’s good to have a big, yellow, clearly marked bag to be clear on what the drug is, fast, without looking in the computer. And while I still think there are patient sensitive ways to accomplish this, it helped me better understand the practice and the goals of it and why it’s done. I love that. The conversations help. The info. helps. We also need context but we don’t get it when treated as cookies or products on a conveyor belt and that’s why ruffles my feathers, triggers me, or sometimes offends. I LOVE your blog and your posts and your advocacy.
In it together, as my friend Donna says, in it together!!!
Cis