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The Maze of Mirrors of

Chronic illness isn’t just what happens inside your body. It’s what happens around it too. It’s the maze of mirrors the world builds around you. You try to walk forward, but in every direction, there’s a disordered reflection of yourself. Not the kind you laugh at in a mall funhouse, but a warped, dizzying trap where every door leads to another hallway, another dead end, another gatekeeper pointing you the wrong way.

And the mirrors don’t just make you look shorter or taller — they show you as lazy, dramatic, hopeless, beyond fixing, too sick, not sick enough. And sometimes, even when you know your own truth, those mirrors convince you they’re real.

You spend months. Years. Decades. Wandering the maze. Bumping into glass. Begging someone to break it. You bump into the medical industry that silences you in polite language:

“We didn’t find anything.”

“Let’s wait and see.”

“It’s probably anxiety.”

You bump into caregivers who mean well — but trap you in their fear. Into insurance companies that tell you your survival isn’t cost-effective. Into doctors who send you down another hallway because they don’t know what else to do. You even bump into yourself — the part that whispers, Maybe it really is all your fault.

The system is built to look like it’s working, but inside it’s rotting. And people outside the maze can’t see that while they imagine you’re being “cared for,” you’re actually crawling, crying, begging anyone to stop the damage. You are surviving — barely — in a system that wasn’t designed to save you.

I’ve been bumping into mirrors for seven years. I survived neglect that so many others didn’t — not because the system saved me, but because God did. He kept me here for a reason. Maybe I don’t fully know what that reason is yet, but I do know I have a story to tell.

So I write. Even when my screen intolerance threatens to steal my voice.

I write for that people who didn’t make it.

I write for everyone still crawling through this maze, wondering if anyone sees them.

And if you’ve never stepped inside this maze yourself, maybe you’ve walked right by it, oblivious, — do you see me now?

👉 I even turned this piece into a spoken word poem. Here’s the video:

youtube.com/shorts/PpQ5dn1xCqE

#ChronicIllness #ChronicPain #ChronicFatigue #POTS #Dysautonomia #BrainInjury #MedicalTrauma #chroniclife #InvisibleIllness #chronicillnesscommunity #chronicwarrior #chronicillnessawareness #chronicpainawareness #PoetryCommunity #poetryvideo #spokenwordpoetry #chronicillnesspoetry #InvisibleIllness

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Medical Assault at Marymount Hospital

[TW/CW: Forced exam, fighting back, dissociation.]#marymounthospital #clevelandclinichospitals I was 14 years old and two months into highschool when Marymount hospital forced me into a pelvic exam I begged to refuse. I cried. I said no. I asked for another way. I was told to "grow up" as my mother held me down and I dissociated to survive.

I wasn't given a scan until after.

The tumor was nearly 3 lbs.

Years later, filing for disability for CPTSD (+) I discovered the most traumatic moment of my life… was never documented. No consent. No exam. No record. Just blood on the sheets and a blank spot in my chart.

“If it’s not charted, it didn’t happen.” - A quote from my teacher who was going over ethics and laws I would have to follow as a medical assistant just years ago. I never passed the blood drawing classes. The alcohol pads made me nauseous, my hands violently shook every time I held a needle.

But it-- This happened to me.

I believe because it was a catholic hospital, I was subjected to the moral ethics over medical and they had to physically confirm that I wasn't pregnant despite neg blood/urine tests. I had missed my period for two months, I presented with a distended abdomen, severe pain.

I'm finding the words and I'm reclaiming my story. If something like this has happened to you, or you know someone it has happened to, please reach out. I don't want to be alone anymore

#clevelandoh #MedicalTrauma #iwasaminor #forcedexams #MyTruth #mystory #PTSD

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While I wait for my stories to be reviewed...

I'm honestly struggling to find the words to talk about what happened. In a way, I feel lied to, cheated, demeaned, degraded, and in another way it only confirms how they treated me at this hospital. I won't go into detail as it is pretty traumatizing and should have a whole list of trigger and content warnings before being read or discussed, but I'm at a loss on how to even put this into words. I was a minor. I was a MINOR.#CheckInWithMe #PTSD #Trauma #MedicalTrauma #Depression #MentalHealth

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Nightmares and Pain-Somnia

All last night I had Nightmare after Nightmare. Mum woke me this morning, I was screaming in my sleep.

I wish I knew what was causing them this time. Normally they occur when about a week after I come off of pain medication (oxycodone specifically). But I haven't been on anything other than my standard medications for over 2 months.

I have a hard enough time sleeping normally (thank you pain-somnia). I have to listen to soft instrumental music to get to sleep at all. Now I am afraid to go to sleep tonight! 😮‍💨

Guess it will be a case of just staying awake until I simply cannot keep awake any longer.

Wish me sweet dreams? Please?

#Nightmares #MentalHealth #CrohnsDisease #AdrenalInsufficiency #Diabetes #StevensJohnsonSyndrome #Anxiety #ChronicPain #Insomnia #PTSD #Migraine #MedicalTrauma #HypothyroidismUnderactiveThyroidDisease

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Between the cracks #Gastroparesis #MedicalTrauma #ChronicIllness

I am experiencing what many chronic illness patients face...falling through the cracks of healthcare. I have ideopathic gastroparesis with intractable nausea. I have failed all conventional treatment modalities. When I flare (n/v/d), it is up to me to get the standing labs my dr has available, to make sure I am safe to stay at home. It is often up to me to review the lab results and seek appropriate care. I have managed to survive despite the healthcare system. Why do drs want to give up on patients who are hard to treat? Why does it take a serious complication to get care? How is an ER md going to know how to treat a complicated chronic illness patient? Its a completely demoralizing system and an isolating scary experience.

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British writer Maeve Boothby O'Neill died of Myalgic Encephalomyelitis and it has led to an inquest:

I'm particularly ill tonight so I'll keep it short.

Everyone w/ M.E. and all our allies should be following this story. The Times of London covered it, too, but their feature is behind a paywall, so here's a free version in Devon Live.

Physician abuse and/or neglect of persons w/ M.E. kills.

Excerpt:

"During the pre-inquest, Maeve's family called upon assistant coroner Deborah Archer to hold an Article 2 inquest to consider whether systemic or policy-based failures could have caused her death. Article 2 of the European Convention on Human Rights protects people’s 'right to life'.

Mr O’Neill told the coroner that Dr Hemsley was describing 'a failure to protect not just Maeve’s life but the lives of those, like Maeve, with severe ME'.

He said: "This was not a case of a local hospital being unable to treat a patient with a particular and unusual illness. This is a nationwide failure to help ME sufferers. This is the very definition of a major systemic failing.

“In my view, this is an admission that there was a breach of the duty to protect someone who was in the care of the state … That breach, in the form of an admitted inability by the NHS to provide care, led directly to Maeve’s death."

Link:

Death prompts Devon hospital chief to speak out on 'ignored' illness

Day 3 of 365

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #cfsisamisnomer #Disability #pwme #physicianerror #MedicalTrauma #Britain

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Death prompts Devon hospital chief to speak out on 'ignored' illness

We highlight the case of 27-year-old Maeve Boothby-O’Neill on International Day of Persons with Disabilities (December 3)
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