“But You Don’t Look Sick”
The thing about living with a sometimes-invisible disease is that it sort of feels like it's you against the world. You're living with this secret, this shadow, this double-life — the person who you may want to present as (with the pain-free mask you may wear) and the person curled up in bed or on the floor because the pain, discomfort, and general run-over-by-a-truck fatigue is so bad. It's hard for anyone to really know your true self, the things you experience each day.
We do things that no one else notices
It's the little things, too, that make your disease very real to you that no one else notices. The way you walk just a little differently because the pressure on your right hip is so painful, the way you run hot water on your back in hopes that it'll unlock. The way you get up so often just so you don't get stuck in place. The way you fidget at dinner with friends because goddamnit, these seats are not comfortable. The way you say "I'm tired," but what you really mean is, "I literally couldn't walk to the store for milk if someone paid me money" or, worse, "I physically cannot walk."
Your life becomes dictated by disease
No one really gets this, all these little moments that add up to a life where you're being dictated by a disease. Sure, we post on Instagram and buy cute clothes and "seem" "normal," but we're not. And the problem with that is sort of two-fold. When people don't see sickness, they don't make accommodations (and let's be honest; people have never, ever been generous with accommodations). But also, when people don't see how sick you are, you feel alone. What's worse than suffering? Suffering in isolation.
The thing is, no one can understand. No one (or those without illness) is going to wake up one day and get it. They just won't — and we can't expect that; that's part of the acceptance process.
We want to be seen as our whole selves
All of that said, it would be validating and beautiful to be seen for our whole selves — the self that feels okay, the self that feels sick. All of it. It would be nice to be seen for our good days and our bad days. Because our sickness is so part of us, it feels weird for people to ignore it, to not take a vested interest in it, especially if they love us.
It's like ignoring a whole section of our lives just because. We come to relationships asking to be seen as a whole being, not in parts. So when I say it's hard to live an invisible illness, it's not because I want sympathy or attention or pity. It's because I want to be whole. To be seen for who I really am — a person with good, mobile, pain-free days and a person who, even at the young age of 34, can't walk sometimes. Can't do things without sleeping more than the average person. Can't work a traditional job.
My identity is made of many parts: I'm a writer. I'm a daughter. I'm a leader. I'm a swimmer. I'm a partner. I'm someone with an inflammatory disease. It's a whole picture I'm after.
Have you ever had to change holiday plans because of lupus?