There's a Place in My Body Keeping Secrets
Well likely, more than one.
[Trigger warning: Epigastric Pain, Inflammatory Bowel Disease, Eating Disorders]
I woke up at 1:10am - the same time I’ve woken up without an alarm for the last few weeks. Sometimes I’m able to turn over and drift my way back to sleep, but not this time. Something inside of me was different.
There’s a gnawing feeling in my belly, about two inches under my sternum and it radiates to the right side. I’ve lived in this body for long enough that this pain is familiar - the problem is I cannot for the life of me remember what previously precipitated it, or how it was resolved. I try to close my eyes and practice intentional breathing.
Inhale 1, 2, 3, 4
Hold 1, 2, 3, 4
Exhale 1, 2, 3, 4
Hold 1, 2, 3, 4
Repeat
The pain doesn’t move. It doesn’t change. It doesn’t lessen. And I know.
I know that this familiar but unidentifiable pain means business. It’s asking to get noticed. There’s a sharp reminder every time I take shallow breaths.
Ironically, in two days time, I’ll be put under sedation for an endoscopy, a routine procedure following the hiatal hernia surgery I had in the Summer of 2023, when my stomach had pushed up through my diaphragm and I couldn’t swallow without feeling like shards of glass were caught in my throat. A surgery I had to fight for, due to my weight, and was told there was a high chance of it failing within a year. Up until this week, I’d thought it’d been living in the clear.
If this pain, this gnawing feeling, if it’s an undoing of the mesh repair originally put into place or a new hernia entirely, I’ll have to have a revision procedure.
Another surgery.
I can’t even think about that today.
But what if it’s pancreatitis, or early appendicitis? I can’t have gallstones - my gallbladder was removed 11 years ago. But it could be any number of things… and there’s really only one way of finding out.
I have to ask the question. The question I don’t want an answer to.
What I want, is to pretend that it’s not there.
That it’s not happening.
That it doesn’t hurt to breath or eat.
What I want is to not be triggered from here until the end of time when something in my abdomen hurts - it’s too much of a reminder.
It’s been ages since I wrote about this part of my story, but now it’s here, it’s raising red flags, it’s yearning to be told.
For six and a half years, I was a slave to the medical system. I knew the words Crohn’s disease, but somehow, they kept evading the doctors that examined me. It’d be impossible for me to tally up for you the number of physicians and specialists I saw, the number of emergency room trips that turned into lengthy hospital admissions, the amount of testing and trial medication I endured - all while being told the same lies from MEDICAL PROFESSIONALS who couldn’t find actual proof inside of my body of whatever was shredding me from the inside out:
“It’s all in your head”
“You must have an eating disorder”
“Its just anxiety”
“This should make your ‘symptoms’ better.”
For six and a half years I kept impeccable notes leading up to each appointment. I could quickly reference the food I’d eaten that did not stay down. The medications I’d taken that did not help. The excruciating pain I’d experienced. The life I was missing out on living at 23, 24, 25 years old. The nights I’d slept on the bathroom floor. The tears I’d cried out of desperation. The weight I was dropping with no control.
The weight that made me people tell me I looked wonderful, that they were jealous.
They had no idea that I was literally dying inside.
It took six and a half years for one doctor to run one very critical test. A pill cam, officially called a capsule endoscopy, was done in January of 2016 - and immediately identified ulceration and inflammation in my small bowel - a place nobody had gone to, a place nobody had specifically looked for. That’s when I was finally, correctly diagnosed with Crohn’s disease.
It took another full two years to get that disease activity into a manageable place, one where I was again living and not just surviving, one where I began relying on IV medication every 5 weeks (still, to this day) that in essence gave me my life back.
Anything, any specific moment, any specific memory, certain smells, certain sights, certain sounds, and most definitely certain pains within my body transport me back into that desperate, helpless girl - who asked and asked and asked the right questions, but was almost never given the correct answer. The girl who advocated as fiercely as possible for her health, for help, for a shred of hope; the girl who had to find that all on her own.
& I’m transported back to this morning
Sitting at my computer, and I find myself wondering…
Why?
Why now?
Why this pain?
What is it trying to tell me?
This story, this journey to diagnosis, this chapter of my life, it’s been well hidden for quite some time. When I talk of medical gaslighting, of being told not to trust my intuition or my body, even the medical malpractice I underwent, those memories feel so far away that sometimes I can hardly reach them. I’ve buried them, deeply, in order to be able to live the most fulfilled life possible.
And the medical trauma I’ve endured since then - it’s all been different.
It’s been related to my spine, my esophagus, my reproductive organs, my joints, my brain. Sure, every MRI makes me cry - but isn’t that normal for patients like me? Yes, having intimate personal experience navigating the medical system has made me a powerful patient advocate and an extremely well versed patient experience copywriter - things that I’ve turned into a career.
But what about the memories I so intentionally buried?
I had to know they weren’t going to stay there forever.
Maybe it’s because of the way Ketamine has opened my thought process, has changed my neuroplasticity, has slowly taken me from fight and flight and fawn and freeze back to functioning?
Maybe it’s because without facing this piece, it’ll always be there?
When in doubt, I find myself making lists of things that I know are true.
2009-2016 was a period of my life I’d do anything to forget entirely.
I was mistreated, mistrusted, and ignored by the very system that was supposed to protect and treat me, and nothing I did or didn’t do caused that to happen.
I have a diagnosis now, one that is 9 years old, and an autoimmune disease that has been managed fairly well for the last 5 years despite a few hiccups.
My body does keep score - and I don’t think this came up by accident.
Inhale 1, 2, 3, 4
Hold 1, 2, 3, 4
Exhale 1, 2, 3, 4
Hold 1, 2, 3, 4
This gnawing pain in my abdomen - it’s a secret my body is keeping from me. Except, Ketamine has prevented us from keeping secrets from each other as well as we once did. And I think that terrifies me.