“But you don’t look disabled,” is something I have heard time and time again. It’s usually the go to response people give me when I tell them about my MHE, if they haven’t been around me during the summer months. In the cooler months, jeans, long sleeved shirts and sweaters hide the physical attributions to my disorder. The bone growths, jutting out awkwardly from my limbs, the scars from previous surgeries.
“I had no idea,” is another thing I hear, especially when I try to explain the physical pain I am in. My current explaination right now, about my heel (arguably the most painful growth on me right now – due to location), is “strap a large marble to your heel. Walk on it. Stand on it. See how comfortable it is for you.” People will shiver with that description and say “I had no idea”.
A lot of the time, I think people don’t understand the gravity of always being in pain. Or maybe they think something like if you’re always in pain, why can’t you just deal with it? I ask myself that too. If pain is all someone has ever known, why can’t it be easy to live that way?
I find myself wistfully wondering what taking two kids to the store would feel like without the accompanying pain and exhaustion that always walks with me. If simple tasks were just…simple.
A common misconception people have about me is that I am lazy. A lot of the time, I reserve energy and avoid doing certain things (laundry, washing the floors etc) because I’ll need that energy later. I suppose, to the outside eye and to someone who has never experienced daily chronic pain, that is lazy…avoiding things, “reserving” energy…but to a sufferer of chronic pain, it’s definitely not lazy. It’s necessary.
I have a checklist in my head that I follow. What are my daily tasks? What do I need to accomplish today? Do I have to go anywhere? Even a grocery store trip or taking my son to school is listed, because those things take up energy and “spoons“. (I’ve talked about the spoon theory so many times…surely you all know what it is by now?).
If I have to leave the house a lot, or if I have a lot of things I need to do, then I subtract the things I can save for another day. Laundry is usually the culprit that gets pushed to another day. I usually clean the kitchen in the morning (from the husband’s late night snacking), but if I have a lot to do that day, I will take more time sitting on the couch than cleaning. Reserving energy. Doing what I need to do, and only that.
Another misconception that people have is that I am content with “being lazy”. No, I most certainly am not content with it. I would much rather do all of the millions of things I have to do and want to do, pain free, without worrying about “reserving” energy for later. Getting ready for the day takes a ridiculous amount of time, especially when I have to juggle keeping the boys out of trouble. If I don’t wake up before them, I don’t do my makeup or hair. There’s just no point. I would waste all my days “spoons” running up and down the stairs, between trying to get ready and keep the kids from terrorizing each other.
I think most people assume that, unless you have a cane, wheelchair, oxygen tank, or some other kind of physical in your face tell, you aren’t “as badly disabled” and should “suck it up”.
A vastly different misconception people have about me is that I am brave and strong. I suppose, in a way, I am. I face the day, I push through challenges, often with far less grace and pose, more manic tears and frustration. Never the less, I somehow make it through the day, and to a lot of people…that’s brave and there is strength in that. I suppose it’s true, in that way.
When I was younger, my family would say “Jessie, you are so strong and brave,” and I would feel guilty any time I felt weak and scared. I would try my hardest to hide being weak and scared, because I wanted my family to so badly think the best of me. There’s always someone worse off, became my motto, and my silencer. It quietened my own personal need to acknowledge that this fucking sucks. Grade eight grad in crutches sucked. Having my peers sign my yearbook with things like was nice getting to know you the three days you were actually at school and hey crutch girl, have a great summer, sucked. But I hid the suck, because of my motto…there’s always someone worse off.
While that statement rings true, it’s also suffocating. Just because someone “suffers” more than you, doesn’t make your struggles less real.