Today I am in a body that’s exhausted. It’s still my body, the same one I exist in daily, but today it is tired beyond normalcy. Even a full night of sleep and a cup of coffee can’t knock the irregularity out of my system. This is life with chronic illness.
If we’re going by appearance, I look fine. I have fairly clear skin and I’d like to believe that my countless hours spent at the gym this year are paying off. But my appearance is not a reflection of my internal functioning.
Today I had a plan: go to class, the gym, get work done. But today my body is telling me otherwise. Since being diagnosed with lupus this past year, not much has changed out of routine. I can’t remember a time in the past ten years where I last felt perfectly healthy. Of course, there are both good days and bad, and on the good days I almost forget about their opposite.
Describing the reality of living with invisible illness is a complicated dichotomy. There is certainly a privilege in its ability to conceal itself. When I reach a peak of sickness, the only noticeable difference is the shift in pallor on my face. But with that invisibility comes a challenge, a constant feeling of having to prove the validity of my sickness.
So what do I call this? A disability? On days where I can’t summon the strength to lift my body from the bed, it seems to be that exactly. I’ve watched my stomach turn into itself at times where I’ve needed it steady. How do you form legitimacy out of an amalgam of symptoms?
Heartburn, nausea, stomach aches, abdominal cramps, facial flushing, fatigue- my symptoms, while occasionally crippling in their existence, sound more like a pepto bismol ad than they do tangible illness.
When a disease manifests only in its internal chaos, how do you prove its existence?
The part about invisible illness that seems to be most challenging is that even I forget it too sometimes. When a week has gone by successfully, without interruption, it’s almost swiped from my mind entirely. But the minute I’ve forgotten, I’m reminded once again.
I want to be the image of health that I’ve presented myself as. The go-getter who hits the gym daily, eats the right things, and gets enough sleep.
But my reality is far from that because my illness doesn’t allow for it. I can only go to the gym when my body allows itself to get out of bed and on occasion, even stairs can drain me of my energy. Some days I struggle to eat and on others I struggle to keep food down. I either sleep too much or too little, and there’s no such thing as feeling replenished in the mornings.
I have accepted that this is my reality, and I’m doing everything in my power to make the most of it. I’m a reminder that health is not transcribed in our outer appearance. The way someone looks is not an indication of perfect functioning.
Today I’m in a body that’s exhausted, but it’s still mine, nonetheless.