"You don't understand! My family doesn't understand. My friends don't get it."
I hear about this all the time in the MS forums I read and moderate. There is a disconnect between those with MS and the people we love and that gap can cause the breakdown of our most prized relationships. Where is the short in the cord? Communication, of course.
In many cases the people around us have been healthy their whole lives. Colds? Sure. Maybe some itchyashell hayfever, the odd flu, or other aches and pains. Granted, some have faced the fear of having cancer. But all in all, most people don't have experience living in a body that doesn't work as expected. It's pretty specific to MS and autoimmune issues. So, how do we let them in? How do we help them understand the world as we see it? Or, on the far end of things, how do we allow people to see past the big red billboard of disability that has long been associated with MS?
I think the answer is in compassion. Not everyone else's compassion towards my own personal situation - that's a bit obvious, I guess. People traditionally try to show compassion to those who are seen as sick or weak. Otherness. Rather, I'd like to find a quick route to compassion for the people around me who don't get why some days I'm smiling and comfortable and at other times it takes a while for me to warm up.
If we, as people with MS, want others to be able to understand, we have to take the same steps towards understanding After all, it's not anyone else's fault they haven't had to work through getting their legs to cooperate and not jerk in the wrong direction like a drunk Disney character on stilts. People can't relate when we don't let them in.
If we can refocus our own feelings of being devastated when others don't understand, and stop indignantly insisting that others should get it through osmosis or black magic, we can communicate more clearly and with purpose. I can tell you from my own experience and the experiences of those around me that when people don't get it, they feel impotent and that cut off can build rifts and isolation on both sides. Taking a few moments to explain why you can't make it to a bbq extends more than information; it offers a very clear connection rather than a mumbled message that leads to confusion.
Subtlety isn't always helpful and stating what may not be obvious to others takes some of the responsibility off of those around us. Instead of feeling resentful towards others when they don’t face the same physical or cognitive issues, or disgruntled over their lack of understanding, hopefully, I can redirect my anger and conjure some compassion towards them. With a little luck, the magic words needed to let them in will stem from there.
“…feelings like disappointment, embarrassment, irritation, resentment, anger, jealousy, and fear, instead of being bad news, are actually very clear moments that teach us where it is that we’re holding back. They teach us to perk up and lean in when we feel we’d rather collapse and back away. They’re like messengers that show us, with terrifying clarity, exactly where we’re stuck. This very moment is the perfect teacher, and, lucky for us, it’s with us wherever we are.”― Pema Chödrön