Today started like any other day does. Each morning, I begin to squint and wipe the sleep from my eyes before I start to take mental stock/inventory. All my limbs are currently here, just as they were yesterday. But are they all working?
Most people begin the day with a yawn and stretch. We, as a collective people, lift our limbs to the limit and reach as high as we can to work away the stiffness of sleeping. But I do it for a totally different reason.
You see, my body is going to be stiff, it’s going to be painful, but I need to know if it will move. Unlike the average person, I, at just thirty years old, woke up one morning unable to walk. And since then, I have woken each day to stretch my stiff limbs and joints and wiggle my toes and my fingers to see which limbs and joints are working today. And which are not.
It is a routine that has become so much a part of my day that I forget that it is not normal to wiggle your toes and wait for pain. Then point your toes and tense your leg muscles and wait for pain. I move on to bending my knees, wiggling my fingers, bending my wrists, and even flexing my hips.
I do it so quickly that I forget that I even do it. And, today, I took my inventory of working or currently malfunctioning joints. And today, like so many times before, my knees would not bend. My ankles sent pain shooting up my legs and my feet felt like my bones had broken.
When this happens, they call it a “flareup,” which is sometimes accurate. But often I want to call it a breakdown. It’s a breakdown of my joints. It’s a breakdown of my body’s communication with itself. It’s a breakdown of my immune system.
I, like many other young people, have autoimmune arthritis. The majority of those afflicted are young women suffering from RA (Rheumatoid Arthritis). I got lucky enough to have a rather uncommon/rare form of arthritis called Seronegative Arthritis. It’s sort of like RA’s cousin. Kissing cousin, really. I once described it as the kissing cousin to RA on the incestuous tree we call the Autoimmune Arthritis Family Tree.
Maybe it’s crass, but it makes the point.
Each morning, countless people wake up and take the same mental inventory I do. They wiggle their toes and fingers and stretch and bend whichever limb or joint is affected. We live largely in silence, having long since learned that “How are you?” is meant as a rhetorical question and requires no response, nor is one desired. We live life as normally as we can, often in excruciating pain. And there are probably more of us than you realize or even than I realize.
I found out that a lot of people I knew had autoimmune diseases and I had no idea. And you know what? It never even occurred to me to ask. They do the same thing I do. We are all tired, or sick, or sore, or need a break. We are never “painful,” “exhausted from our disease,” or even simply “having a flareup.” The first lesson you learn is that few people will stay in your life when you are diagnosed. Even fewer if, like me, you are housebound for any period of time. And the few who do stick around want to fix you. So, after watching most of your friends and family jump ship, you lie to keep the rest around.
So each day, I wake up, rub the sleep from my eyes and see which joints and limbs are working today. Sometimes I am only able to get out of bed to go to the bathroom. Sometimes I can fold laundry, but not go down the stairs. It all varies, but when people ask me how I am doing or feeling, I say I’m fine, I’m tired, or I don’t feel well. That is easier than saying that I’m suffering another breakdown.
My body has broken down. And I am not that old.
And it’s more common than you think.