Twenty year old me was the life of the party. Yeah, I had a 2 year old son at home, so most of my time was spent working, taking care of him and school. However, those rare moments out were spectacular. I owned the dance floor and easily took full advantage of a girl’s night out. I was vibrant and boundless energy poured out of me like a seasoned rockstar. I’d grab a chance to jump on stage and dance for hours, letting the vibration of music shake my bones until I couldn’t stand any longer.
As 20 turned to 30, those nights grew fewer and farther in between. I noticed a change in my tolerance for being in a crowded place, the sounds were too loud and the smoke made my voice raspy. I was in denial that I didn’t quite enjoy it any longer. I did it though, because that’s how my friends knew me and that’s how we got together. We would bar and club hop, and dance our asses off. I’d pay the brutal price for the next week – but heck, it was worth it!
At 35, I may as well have turned 70. Entering a club felt like torture. The change in those five years were horrifying. All my prior manageable and hide-able symptoms were on display for all to see. Well, not physically, as I still looked like I was in my 20s. Inside, however, my body was rebelling from years of over-use, a bad diet and an un-nurtured rare disorder. I had just announced my health journey with my friends, but they didn’t grasp it since I still looked healthy.
I felt obligated to attend everything I was invited to, even if that meant putting myself in a place where it would take weeks to recover. At first my friends were disappointed and even upset, which crushed me. Then I realized something important. If they cared enough about me then they would realize that I’m not 20 year old me anymore. I won’t apologize for it again and I certainly won’t apologize for saying no.
When I can’t or don’t want to do something, I will simply say, “No thanks, not this time. Have a great time though!” When you deal with pain on a daily basis, a magical thing happens – your time becomes so precious. I’ll happily say yes to the things that I can do, knowing I may need to cancel, but I won’t apologize for it.
I can’t control my Ehlers-Danlos syndrome or related illnesses and flares, so by saying I’m sorry shows that I feel like I’m at fault and I’m not. I didn’t choose this illness, but I can choose to say no when my body needs me to.
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