Alright spoonies! How many times have we all heard this? “You look so well!” And sure, my leg isn’t broken, I’m not connected to an oxygen tank, and I can generally walk on my own, so yes, I look fine. The problem with that is that I’m not actually fine at all. I am probably about a 6/7 on a pain scale, 8/9 if I have been out all day, I’m nauseas, and the volume of your voice makes me want to flinch in even more pain. But chronically ill people continue to say time after time, “Oh, I’m fine!” Because when were honest, no one wants to really hear the laundry list of things going wrong inside our bodies in any given moment. And people believe our front. At first they just assume what we say is true, then they just want to spare themselves the laundry list, but finally and most importantly, us chronically ill folk are good at what we do. We can smile and look normal through almost any situation. Were the most accomplished actors around. From learned experience we decide that the easiest option for us in most situations is to grit your teeth, smile real big, and pray whatever you’re at ends soon so you can go home and crawl into a tiny little ball.
So whose fault is it? Is it theirs for not prying further or ours for lying again and again? There really is no answer other than to say there is progress that can be made on both accounts. They can be more attentive, learn our tells and help not to push us over the edge when they see were coming close. But the biggest change has to come from the spoonie themselves. We have to stop putting up a bullshit front and admit when we are reaching our limit and accept the help to back down from whatever it was that was pushing us so far. We also have to learn to say no. We have to say no on the night of our favorite sporting event because we know the consequences it would bring. We have to say no to the birthday party even though we spent 3 hours looking for a dress. We have to allow our own self-preservation skills to take over and trust our gut. And once we do that, then we need to not apologize for our bodies dysfunction. I didn’t miss my cousins wedding because I wanted to stay home in bed. I didn’t miss my ex’s graduation because I wanted to stay on the couch. I missed those things because my body let me down, and the sooner you accept that and forgive yourself for those things, your mind will stay sick forever. Even when your body is well.