I want to write also about the -it is all in your head- stuff. I lump it together with the advice that doesn't help........-you just need to release anger, you need to eat more protein, you need St. John's Wort, what are you secretly avoiding by manifesting pain?, that isn't a real diagnosis, you just need to get out of the house more, well I get achy too but I don't whine about it, just stop thinking about it-...........etc.

Folks can think whatever about illness, about my illness, about their own, about what it means in the grand scheme of things. I work to not worry about that, not sweat the small stuff. I also work to trust my own experience and instincts. If someone tells me what to do, insists that a certain something will cure me, I certainly do not have to rush out and do that thing, swallow that pill, eat that food, chant that mantra, buy into that philosophy.

I prefer that folks actually ask me first, ask if I am looking for new ideas. Because many times they have no clue how much I or anyone else in this position has researched and tested.

I have to wonder too at the impatience some people display towards those of us who are disabled. It is as if we are somehow less than, weak, yucky, inferior, lazy. Sinners. A waste of space.

Sometimes the best support isn't at all about telling us what we are supposed to do. It is about just being with us, witnessing, asking how they can help. Without prejudice. When we can listen to each other, let each other vent and express, we provide safe space for healing and maybe even some solutions to arise. And sometimes, even often, no miracle happens, but we all get to be human and real with each other.

Sarah