Everything Hurts

going out

Know to say NO

Amanda VinciComment

I'll admit it, I have a hard time saying no. Do I want to go shopping at 2am on Black Friday? Yes! Do I want to hike a mountain in the Arizona heat? Yes! Do I want another slice of birthday cake? Yes yes yes. Does my body? No. My body does not.

Most of the time, I am pretty content with my decision to go forth and try something. Actually, I'm usually proud of it. "Hell yeah I walked three miles in the 100 degree desert despite my disability. What did you do?" But just because I've said yes to doing something, doesn't mean I shouldn't tell myself 'no more' while doing it. 

My recent lesson in the game of yes & no came in the form of my close friend/creative partner's bachelorette party. When hearing of the night's plan of a pre-party, then dinner, followed by drinks and dancing in the Manhattan's Meatpacking District, I was game. So game that I even wore heels without bringing along flats (what was I thinking?). I was delirious.

I try not to let my condition stop me from enjoying life. I rarely say no to an event, and I really am glad this is how I've chosen to live with my disability. Even if I may not feel as well as everyone else, I show up, and the act of showing up in itself is a major victory for us spoonies.

That night, as I danced to some of my favorite songs, and laughed along with the other ladies, my pain grew stronger and the voice in my head shouting NO grew louder. I needed to take a seat. I needed to take off my heels. I needed to be home... in my bed, watching Netflix. But I was defiant, I kept on going, pretending I wasn't feeling a thing. My determination to 'be normal' was getting dangerous... I finally sat down. I sat right beside the other girls as they danced, towering above me... I danced in my seat, feeling lame. I sat there for what felt like forever (it was 5 minutes) and decided I was in perfectly good health, kicked off my heels and rejoined the party.

This, was a poor decision. The next day was a blur of pain as I moved from the bed to the shower to the couch and back again. There were zero spoons to be had. I heard the voice of reason— "You, are not like everyone else. You, need to chill the f**k out."

I had learned my lesson. One month later, at the same friend's wedding, I now applied a new set of rules to the way in which I would have a good time. I wore heels to the ceremony and in the photos, but ditched them for Rescue Flats as soon as I got to the reception. (The bride was a genius for getting these!) I balanced dancing with sitting, and made sure to take pain relievers before, during and after the event. Was I pain free? Of course not. But I was feeling good and still had a great time.


Instinctually, I'm a yes girl. You may have the same problem, or you may be the opposite – saying no in order to protect yourself from the pain. There's no wrong way to live your life when you have chronic pain, but there is a way that's right for you.

Do what makes you happy, but also what makes you feel as best as you can. Your body knows you best, so say yes, but then... say no.