My Biome Is My Home: Living With IBS
It’s been a while since I’ve posted on my blog, but I’ve been working on a long project (a book I’m trying to get published!) and dealing with tremendous pain over the past many months. Today is IBS awareness day, and for those of you who know me, I’ve certainly brought it up or you’ve seen me run to the bathroom and on the verge of just curling up in a ball on the floor.
A couple of years ago, the ghostly demon that is IBS entered my life. Over the past many months, this demon has taken control of me in unprecedented ways that I would have never imagined. Today is the day we recognize a syndrome that 1 in 5 people you meet fight every day; today, especially after what I have experienced/am experiencing, I feel a duty to raise awareness about the pain that IBS causes me both physically and emotionally. This piece, which I wrote a couple weeks ago, is a raw, yet non-graphic expression of my journey with IBS. Between false accusations, misdiagnoses, and dismissal, I am now learning to become not only my own doctor, but my own advocate and healer. Although this illness is truly invisible to those around us, we often have no choice but to reveal it at some point— at least I have, and it hurts. I am learning that we should never hide behind our pain: we must embrace it and know that we aren’t fighting it alone. There’s nothing to hide, only something to gain— like me, by sharing your story, you can find an unconditionally supportive circle whose knowledge-base, resources, and care are a step toward balancing your inner-harmony. There is no treatment for IBS, everyone’s gut is different, and yes, trial and error is the only way to understand it. For those of you who are just as done as I am suffering, I hope you can relate to this piece and find light at the end of the tunnel. This rocky journey will lead you home— it is just a learning curve your mind and body must combat together. And only you, by becoming your own advocate and voicing your needs, will fight this demon with pride and emerge empowered in your own body, mind, and soul.
MY BIOME IS MY HOME
An illness that nobody sees
But me— Or at least—
That’s how it feels
Monstrous as can be
Where can beauty be found, let alone be felt
In my body, in the belly of a beast?
Bloating and belching
Wondering if this nightmare will ever end,
Spare me a day with no bending over in pain
Please, it’s tearing me apart
I’m going insane
They say it’s in my head:
“Nothing’s wrong with you. All the tests came out normal.
Stop being dramatic. Just stop crying.”
Really? You think I want to be like this?
You really think I’m lying?
They step on me but don’t know my story
How light turned dark
In the weight that withered, the life that was lost
False accusations, no definitive diagnosis—
That’s your denomination.
By mere appearance they conjure assumptions
And with each presumption my power plummets
But despite what anyone may think,
I have learned to find a target through dismissal
To shoot my missile
To tell you my story and how I sink
Desire is prohibited
Meals I enjoy can be enjoyed no longer
The spices one savors, the scent, the sensation,
Pleasures I simply can’t ponder
Food is frustration
Want to try cooking for me? Don’t even bother.
What is your blessing feels like my curse
Wasted days of sulking,
Sometimes, that’s how I feel
Like wasted potential
It’s an endless cycle
A sickening spiral
Falling through a drain,
In the shadows of shame
On the bathroom floor, my closet of comfort
Just close the door and leave me be
Searching for answers—
That won’t help now.
Embrace it. Stop throwing a fit.
There’s nothing you can do.
The dagger stabbing my insides
Destroys the dreams I want to pursue
It consumes me, infuses me with spite
My heart bleeds
My stomach burns
I do everything right—eat healthy and exercise daily—
And this is what I get in return?
You will meet someone like me
A high achieving student-athlete,
Tailored to the tee
A young face, only eighteen
She wears a face of makeup that glows,
The only part of her body the girl can control
And the clothes behind which pain hides
After changing a hundred times
Mind and body split into two
Bound by the bondage
Entire being halted. On hold.
People ask what’s wrong
You wipe your tears, and try your hardest to contain
Simply say, “Oh, my tummy hurts”
But I’m in flames
Most can revert to their usual tasks
A stomach ache can’t be THAT bad
Just put on a big t-shirt and go to work
But me—I can’t. My world goes black.
Vulnerable as broken glass
I tell myself to wait, the pain shall pass
Please, give me any strength I can amass
They tell me to be confident,
They tell me that I’m talented,
And that I can be someone prominent
If I could only lift myself off the ground and replenish
Then in all my aspirations,
In all of my delights
I would relish
How my dreams and desires disperse
Like grains of sand
Through the wind and into a cavity
No, Sabrina, you cannot stand
Oh, how I dread these moments of agony
That’s what it’s like living with this pain
It’s not a disease, but a “syndrome”
Symptoms seem manageable, an easy fix—
I feel tricked—
Take this, take that, eat this, not that—just drink things!
I’m on the brink
I’ve tried it all: No remedy is magical
The root cause remains a mystery
With findings inconclusive
The prospect of healing seems elusive
Healing takes mastery of oneself
Depth. Hold in one breath.
Reflect on how far you’ve come,
The sum of your journey has not yet been reached
It has actually just begun
Every day you start afresh, you’re alive—
You can breathe
You can move
You can speak
You can improve
You will emerge from this battle no longer tender
Scars staining strength
Strong, that is what you are
On yourself, never surrender
You are not “psychologically impaired”
You are not “disordered”
Advocate for yourself, don’t be scared
Yes, I’ve yelled at someone before
People must hear your voice
They must remember that
Even if they can’t see it,
They can’t see how hard you strain
The pain is still there
It’s despicable, it’s contriving,
Tell people so they know what you’re fighting
And that the spark of mastery in mind,
Beauty in body
Is what you’re igniting
Life is for living,
No more disguising.
I need support, less sympathy
Not a symphony sung
Nor a resort to relax
I need help not hate
To abate this cycle, to end this mess
Give me answers so I can “destress”
Just like you asked
I need to be held up so I can heal myself
So I can heal my health
So I can hope—
It’s not in my head.
Never say that again.
To all who can relate
Relay, redeem, reclaim
Reclaim your self-esteem
You need it to pursue your dreams
Reframe your narrative, share it with pride
Present it ugly as it is, no fear
Fighting with you are millions
Millions are on your side
As you battle, know that your biome is brave,
Your gut is not your grave
It is home.
And to home, only you can pave the way.