The Faces of Invisible Illness: An Awareness Plea

The Faces of Invisible Illness: An Awareness Plea


“You’re one of the stable patients,” they told me.
As they kicked me to a dingy corner of the hospital. With the other “stable” patients. No space. No privacy.
No dignity. But hey, at least I wasn’t dying. She waited months for a specialist appointment.
Because she was stable. Couldn’t work. Couldn’t read. Couldn’t eat if not for the tube in her side. Couldn’t lift her head. But she didn’t look sick. If you ignored the puffy lines on her face The way she always looked for a place to sit The look of defeat in her eyes. But hey, at least she wasn’t dying. But what is dying?
Because I don’t think this is living. Laying in bed.
Staring at the TV, but not really watching. Sorting pills.
Scrolling through tumblr and twitter
Just to know there are others like me. Making plans
I can never seem to keep. I’m not living. And what is the opposite of living? “At least you’re not dying.”
But I am. I am dying on the inside. Dying to live my life. Dying to be independent. Dying to work. Dying to go out for drinks with friends. Dying to hike a mountain
Or ride a roller coaster Or spend all day fetching coffee for a boss
Bemoaning the life of the underpaid millenial
So I can climb the ladder of success. We are dying to have new stories to tell
Because we’re running out of ways to say “Yeah. Still sick.” With a smile. Every day we die in so many different ways.
And we know it will never stop. I will never wake up without pain Without fear
Of how I will support myself Or guilt Because others must now support me. And I cheer when I see
Charity drives, awareness walks new medications
For scary diseases
That I am lucky to not call my own. And yet,
A small, unsettling, unwilling voice whispers “When will it be my turn?” We’re not dying. But sometimes That’s the scariest part. We don’t mean to be harsh
We don’t mean to be morbid But this is our truth. This is our reality. And part of that reality is softening our truth
For you. But today
I just don’t have the energy. This isn’t a battle we can win.
I’m not “strong enough to beat it.” My illness doesn’t care how strong I am How stubborn How weak How tired. Illness doesn’t discriminate. It gets us all just the same. I’m tired of dying. And I fear I’ll be dying the rest of my life. I know what you’re thinking. But these words don’t come from a place of depression. These words are my reality. And no medication can change that. I don’t need fresh air.
I don’t need a new diet.
I don’t need a new supplement. I need funding.
I need research. I need a damn miracle
Medical breakthrough. I need a break from my broken body. But I’m stuck here.
A prisoner With no chance of parole Please don’t tell me it could be worse. I know
It could be worse. But it could also be better. So much better.

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Comments

  1. Yes to everything here! I'd love to be involved in a video if I could be. I was born with a heart/lung defect TAPVR type 3. 1 working lung. asthma. RA. TMJ. autoimmune issues and a low immune system.

  2. Something I've noticed is that women get hit with more acute symptoms of various immune deficencies, and other chronic diseases. It would be interesting to see if there is a statistical skew between female and male population groups.

    Personally, I have Celiac Disease, but my symptoms were more classic in nature compared to what I've seen with female Celiacs. Of course I'm waiting for the next autoimmune shoe to drop, but hopefully it won't be too serious.

  3. Thank u SOOO much for putting our daily struggle with chronic pain in words. 🤗I can't even get out of bed in the morning before the pain starts. 😣It is the frustrating how no one "really" understands unless it you yourself😑. Not even those who are trying their hardest to support and help u on this journey- it really does make u feel like a liability .😔 This is definitely NOT living.

  4. Thank you for this video! ♥️ Needed to hear from other spoonies about their lives. We're not alone ♥️

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