What You Don't See

Sitting In the Shadows of Invisible Illness

Photo by Annie Spratt on Unsplash

I wrote this yesterday while sitting in the car at the grocery store. I didn’t feel like going inside. My husband and I were on our way to a dear friend’s birthday party. I didn’t have to go, she would have understood, but I wanted to be there, and would feel just as shitty at home. Writing this was therapeutic. Thank you for taking time to read it.

I’m fucking devastated by the inconsistency of my body.

But I love her, so deeply.

I’m consistently exhausted by my exhaustion.

And yet, I try to remain patient with it all.

Some days that’s easier said than done, there is no predictability to this illness.

My heart, tick-tocking furiously, like an overworked, broken metronome, throwing off my life’s entire rhythm section.

My head, aching, burning, disconnected, in a haze of clouds, separating me from the life and people that I love.

My body, heavy. A drained battery. Arms feeling disconnected from my center. Walking feels like dragging. Sitting, a collapse of bones, muscle and tissue into a chair.

I’m angry, devastated, and resentful of this virus, and of the people who still don’t believe it exists.

The sticky, life sucking, anything but novel C-word that completely altered my body, and my life for what feels like permanence.

It will be five years, this March.

Five years of putting on a face, concealing the heavy bags that sit underneath my eyes, remnants of disconnected, fragmented sleep. Restless with pain and legs that ache and crawl.

Magnesium. Melatonin. Movement. Meditation.

Mourning.

Photo by Brandi Redd on Unsplash

Looking in the mirror, I add color to my lips, amaranth, a shade that looks like joy.

Hoping it will help me find my smile.

I work diligently to appear less tired, less in pain, less overwhelmed, less over the never ending monotony of being on a rollercoaster that I can’t get off.

My life and career have the same expectations of me as they did before I became sick.

The world doesn’t pause and wait for you to get better.

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And so, I mindfully move with, and through my emotions. A careful balance of feeling, but not overly. If I allow myself to stay too long, that somehow makes it all worse. It’s not that I’m afraid of feeling, it’s the repercussion, the heaviness that can take me down for days. The volume gets too loud.

I crash.

And I rise. Over and over.

Reminding myself of the impermanence of this state of overwhelm. Knowing I will once again have carefree moments of laughter, walking arm and arm, down the street with my daughter.

Blissfully unaware of my body, thoughts and limitations that may be just around the corner.

So comfortably lost in the present moment, I see only her bright blue eyes, and her reassuring smile. Knowing that I am mirroring that right back to her.

Beauty, grace, strength, warmth and resilience.

I may be chronically ill, chronically tired, chronically over it all, and yet I will continue to keep chronically trying.

For me, it is the only way.