We spoonies tend to get so annoyed at people’s efforts to try and tell us how to cure our disease. The complaint is that they don’t know anything really about our condition but want to go on and on about how their brother’s girlfriend’s yoga teacher was sick with what we have and they went on this diet / exercise / nutritional supplements / medication / meditation / used magical moon crystal magnets and was cured.
The part I find most annoying is how invisibilizing it is. I have spent thousands of hours not only living this illness, but researching it, trying a billion treatments, and going to doctor after doctor who gives me test after test. My chronic and debilitating illness impacts every single part of my life, leading to isolation, loneliness, pain, frustration and fatigue.
Even if the advice giver was right I wouldn’t want to listen to them because, quite frankly, they didn’t listen to me first. When living a chronic illness, most of the time alone and struggling, it appears incredibly arrogant for some one who is barely ever there to waltz in, tell me what to do, and then walk right back out, leaving me still alone and in pain. Arrogant, self-righteous, cruel, entitled, selfish, condescending, pedantic and thoughtless. This is the view from the bottom of the well.
On my good days, however, the days I can muster up compassion, the view can be different. On those days I realize the advice giver probably means well. Although they are not able to really see me, and have not the slightest clue what my life is like (which quite frankly I would not wish on anybody), they do feel some measure of compassion. Some part of them does wish I was not suffering, and makes an effort to alleviate that suffering, albeit in a very clumsy and self-absorbed manner.
They are much like a five year old who, knowing very little but meaning well, decides that a hello kitty band-aid will fix it. They hand me the band aid, expect a smile and thank you, then toddle off back to play with their toys and have fun with their life.
I would not rage at the five year old. Why do I rage at the adult? My expectations. Expectation that they should know better. They should see me. They should understand. I think all of these expectations unconsciously stem from the belief that they need to take care of me, or that they owe me something. Or something like that. But when I am able to not expect anything from them, when I am able to feel confident and secure in my ability to meet my own emotional needs, that is when I am most able to see their sincerity to make an offering.
Their advice won’t cure my disease, and that may trigger feelings of despair, sadness and anger. But that is on me, not them. Just like that five year old with the hello kitty band-aid – that won’t cure my disease either. But seeing through the offering to the part of the intention that is good and sweet can make me smile. And that is a gift indeed.