Chasing Spoons

I wanted to continue the theme of my last post, which discussed leggings as pants and how I try really, really hard to not look sick. Unfortunately, there are so many who judge those of us who suffer from invisible illnesses because "we don't look sick." Social media has made it easier for us to edit our lives. We all share and post snapshots of everyday life, but everyone is cognizant of what they're posting. It's like going to church on Sunday morning, everyone wants to look their best. Everyone wants to portray a Pinterest-perfect life or share things that make them (and others) happy. We share our happy times, but only gloss over our not-so-happy times. But what does this mean for us spoonies?

It seems like we can't win for losing. If we share our good days, our trips to the salon, our family trips to Disney or the beach, we're accused of faking our illnesses. We can't possibly be sick because we're at the beach. But on the flip side, if we share our bad days, we're accused of being attention-seeking, or worse, trying to scam people (yes, I've had someone say this to me). We're offered (unsolicited) advice along the lines of positive thinking and in some cases, flat out told we're being too negative and bringing everyone down.  So we curate our social media, we constantly seek balance with what we share. We want to be genuine, but we don't want to be too negative. We don't share too many good days, lest we appear to be exaggerating our illnesses. Same goes for our attire, I don't want to look sloppy, but I've also questioned outfits when going to a new doctor because I don't want be accused of falsifying my symptoms. 

All of this has got me thinking. Why? Why are we so quick to judge someone who is ill? Is it because I don't work a traditional job? I promise I'm not sitting at home eating bonbons. My working from home is out of necessity, not luxury. While I am grateful for the ability to work on my own time, I still wish I could hold a regular job. Just because I can pull myself together and have a few good days to go to a wedding, take a day trip to Austin, or go out with friends when I'm feeling well, does not mean I can maintain a 40+ hour a week, 9-5 schedule. My body doesn't work that way. Most of the time, my usual responsibilities of making my doctor's appointments and keeping up with the housework is too much for me. There are some days (and weeks) that I push myself-like this week, I've been dealing with a bad flare (or something, my doc was stumped and has deferred to the specialist) but between my medicine and a whole lot of sleep I've managed to get my bedroom closet cleaned out and organized, my bedroom cleaned and organized, and most of my living room organized. But that's not without a price, I am exhausted, I have lost track of the days this week and missed some phone calls that I needed to make, my business has taken a bit of a backseat, as has my blog. My kitchen is in disarray and I still need to chase down the property manager about my dishwasher. My laundry basket is overflowing and I need to scoop the cat litter. 

But I don't look sick. I may not look sick, but if you look at my home and my chaotic schedule, you can see my illness. You can see the where I started to clean the kitchen but stopped because I was too tired, you can see the laundry pile in the living room that never made it to the laundry basket, you can see the plastic bins, still in their packaging, sitting on the chair waiting to be filled and put away. The chair...the chair that is currently sitting in the middle of the living room because I don't have the energy to help my boyfriend move the futon to the guest room. So it sits, simultaneously blocking the door to the downstairs bathroom and impeding passage from the living room to the kitchen. 

I may not look always look sick, but if you look closely, you can see my illness.