I just found this blog online and I’m already in love with it. Living with Lupus – But Dying of Everything Else. She knits and she’s funny – that’s really all I’d need to enjoy reading her blog. But there’s much, much more.
She puts beautifully into words what I’m thinking, no doubt what many people in our situation are thinking. Look at this from her Aug. 1 post:
“The other day during my spinal tap I was feeling very alone. It was a routine outpatient process and I was very much “invisible.” I said, “This is very uncomfortable.” And the doctor asked me, “What are you feeling?” I told him I could feel the needle and that it was unpleasant. He put more numbing there and continued. But he got paged and was upset and began grumbling. And I said, “Don’t get upset while you are working on me. It is not TIME for that. STAY WITH ME. Be with me right now.”
I was reaching out and reminding him THAT I WAS THERE. I didn’t mean to. I realize now that I was simply so alone in the discomfort and I didn’t want him messing up out of being angry or over burdened. And I said, “I don’t want to be alone in this.” Nothing more was said. Of course – doctors like that are not overly compassionate. But I realize NOW that I was doing EXACTLY what research shows women do when they are in pain. They reach out. They seek connection with their environment. We are the sum of all our parts.”
Geez how beautiful is that? I hope her doctor is reading this.
There have been so many times I’ve left a doctor’s office in tears because I’ve felt so alone. And there have been times that my wonderful doctor has given me bad news, awful news, but I leave with my head high because he’s a great doctor and has made such a connection with me that he gives me hope. It is often so contextual. Like a constant reminder that we are human, and we are complex. And yet, simple – just be kind, and we can get through this together. I wish all doctors understood that.