The hardest part of disability hasn't been the pain or the scooter use or the fear of not knowing where Blood Work Gone Really Wrong (TM) is headed. Nor is it even the dreadful medical procedures and endless medical appointments. All of these things are incredibly difficult, of course. It's the disablism and abandonment by people I knew and trusted, people who refused to show understanding when I needed accommodation. People whom I thought were friends who took more than one step away, who clearly don't want to hear about the last surgery or the next one or how you're wondering this week if you have lupus or a liver disease that will kill you, or if the pain will ever get better. It's not that I need to tell everyone everything. I don't need to, and I don't. But when someone doesn't understand why you can't make it this month because you have to have surgery the day before, why you couldn't make it last month because you were ill from the surgery you needed to have...I'd ask whether they realize I wanted to be there and that it hurt not to be, but I know the answer.
My close friends have not forgotten me and understand my limitations. I know others are busy with their lives and have their own challenges. I don't have expectations that they make special efforts on my behalf since the demands on their own lives are at times overwhelming. But some empathy or understanding instead of judgment for what I want to do but cannot, that I would like. This is what I mean by saying abandoned, when I write someone I worked closely with for long hours to say I can't attend an important event because of surgery, but that I have a gift I want to mail to her and need a new address--and there is only silence.
This also happened on my first day of scooter use, a very long day with a lot of pain. There was a huge arts event a friend had planned with a major speaker, and by the evening I could not go. Could not. Pain an 8 out of 10. The problem, I think, is that people identify with pain, not Pain. Understanding? No.