Medical Bias on the Relationship Between Chronic Illness and Social Media

How Misdiagnosis, Stigma, and Isolation Drive Patients Online

By Giusiana Prosser

Introduction

While medical professionals have long been critical of chronic illness patients who use the internet in their search for medical care, critics of the relationship between social media and chronic illness are becoming much more vocal and widespread, often having detrimental outcomes for patients. These people often use terms like "sickfluencers"- people who share their chronic illness experiences online, “Sick Tok” and “Sickstagram” to describe the chronic illness presence online. What these providers often fail to recognize is why so many patients are drawn to social media in the first place: not for attention or validation, but for survival. These platforms offer a refuge when the medical system fails to understand, family and friends retreat in discomfort, and society dismisses invisible suffering1. Online spaces become lifelines, offering education, empathy, and community that are often lacking in real life.

What looks like oversharing or dramatization to outsiders is, for many, a desperate act of truth telling in a world that denies their reality.

Chronic Illness and the Search for Hope

Nobody who documents their illness online wants to be sick. Patients fight every day through grueling treatment regimens, misunderstood symptoms, and inaccessible care not only to survive, but to live meaningfully2.

Many chronic illnesses have no cure and many more have few or no treatment options, with relief often coming only after years of misdiagnosis and medical trauma. Even then, the path forward can feel uncertain. People share their stories not to stay trapped in illness, but to process their experiences, find solidarity, and offer hope to others navigating the same storm.

A well edited photo or upbeat caption on Instagram might obscure the reality behind the screen: pain that wakes them at night, appointments that go nowhere, mobility aids they were once afraid to need. The internet becomes not only a coping mechanism, but a record of resilience3.

The Need for Support

Chronic illness doesn’t just take a physical toll, it erodes relationships, upends routines, and isolates even the most outgoing person. Someone who may have previously been active and outgoing before may be housebound due to symptoms. It’s unreasonable to expect people to no longer need support just because that support is no longer in the “real world”

While we juggle endless appointments, failed treatments, and financial hardship, we need compassion. When hope feels fragile and despair sets in, we need encouragement. In moments of brain fog, widespread pain, lost dreams and lost identity, we need connection.

Social media fills a gap where real-world support systems break down. If you understood how profoundly lonely chronic illness can be, you wouldn’t criticize those who use digital tools to cope, you’d thank them for their honesty.

Instead of judging, try leaning in. If patients had more real world support, the need for social media wouldn’t be so intense. 

• Friends and Family: Don’t disappear when a loved one gets sick. Call. Text. Offer a meal. Validate their pain, even when you don’t fully understand it.
  
  

• Medical Professionals: Dismissiveness is not neutral, it’s a form of harm. When patients report worsening symptoms, listen with curiosity rather than suspicion4.
  
  

• Parents: Tell your child you believe them. Advocate with them, not against them. Your trust is more powerful than any prescription.
  
  

• Employers and Educators: Build inclusive environments where accommodations aren’t seen as burdens, but as tools for empowerment.
  
  

Until offline systems offer reliable and respectful support, the internet remains a place of refuge, resistance, and truth.

Medical Bias and “Trendy” Diagnoses

Some diagnoses; Postural Orthostatic Tachycardia Syndrome (POTS), Ehlers-Danlos Syndrome (EDS), Mast Cell Activation Syndrome (MCAS), ME/CFS, gastroparesis, mitochondrial disease and more; have become stigmatized by clinicians who dismiss them as "trendy" or overdiagnosed5. These patients are often accused of faking, or diagnosed with “functional” disorders without proper testing to rule out other possibilities.This attitude reveals more about medical bias than patient behavior.

People with complex, multisystem illnesses often accumulate multiple diagnoses. That doesn’t mean they are faking, it means their bodies are failing in more than one way. Yet patients who arrive armed with research or ask about specific conditions are often branded as “too informed,” “hysterical,” or “difficult”6.

This bias disproportionately affects women, people of color, neurodivergent individuals, and those with disabilities. It perpetuates a dangerous cycle: the more a patient advocates for themselves, the more they are pathologized for doing so.

"Sick Role" Theory: A Framework Misused

In 1951, sociologist Talcott Parsons introduced the concept of the “sick role,” describing how society manages illness. The model asserts that sick individuals are7:

1. Exempt from normal responsibilities (like work or school)

2. Not blamed for their condition

3. Obligated to try to recover

4. Required to seek and follow medical advice
   
   

Parsons intended this as a functional tool for understanding society- not a moral judgment. But the theory, paired with Freud’s concepts of secondary gain and conversion disorder, laid the groundwork for decades of harmful assumptions8.

In the wrong hands, the “sick role” becomes a weapon. It allows clinicians to label suffering as manipulation, and frames non-compliance not as a call for help, but as proof of pathology.

When Theory Becomes Harm: Pediatric Pain Programs

Psych-centric pain rehabilitation programs, especially those aimed at children and teens, often misapply psychological theories to explain physical suffering. Patients with rare, poorly understood, or invisible illnesses, like CRPS, POTS, MCAS, EDS, or mitochondrial disease, are frequently subjected to “retraining” regimens that ignore biomedical realities: 

• Forced physical therapy despite excruciating pain
  
  

• Withheld medications or refusal to honor treatment plans
  
  

• Dismissal of specialist findings that contradict a psychiatric narrative
  
  

• Restriction of communication with parents or caregivers
  
  

• Isolation and behavioral penalties for refusing treatment
  
  

In many cases, families are accused of Fabricated or Induced Illness (FDIA), formerly known as Munchausen by proxy. These accusations can lead to child protective services involvement, loss of custody, and years of litigation- all based on unproven suspicion9.

The logic is circular and cruel: if you resist treatment, you’re reinforcing your “sick role”; if you comply, you’re “reward seeking.” There is no winning path. Only trauma.

Factitious Disorder: Rare but Overdiagnosed

Factitious disorder (formerly known as Munchausen’s Disorder), both in individuals and in caregivers, is exceedingly rare10:

• Factitious Disorder Imposed on Self: Affects only 0.1–1% of hospitalized patients10
  
  

• Factitious Disorder Imposed on Another (FDIA): Estimated at 0.5–2 per 100,000 children annually10
  

Despite this proven rarity, it is diagnosed far more often - especially in high-conflict cases involving chronically ill children, young women, or patients with rare and poorly understood conditions. A single clinician’s suspicion or a single note in a chart can set off a chain reaction of investigations, hospital bans, court orders, and family separation.

Why These Misdiagnoses Happen

• Many rare illnesses lack definitive tests or present inconsistently or intermittently

• Patients with overlapping diagnoses seem "too complex" or "unbelievable"

• Healthcare systems often treat unexplained symptoms as inherently psychological

• There is implicit bias toward blaming caregivers - often mothers - especially in pediatrics

• Lack of training or understanding leads some clinicians to label what they can’t explain as psychological

• If symptoms persist across multiple specialties without clear answers, bias towards psychosomatic explanations increase drastically

Misused Criteria

FDIA guidelines, such as those used at major children’s hospitals, list “red flags” like:

• Patient or parent has extensive medical knowledge or advocacy

• Patient is “Doctor shopping” or seeking second opinions

• Patient has a history with multiple specialists

Common Red Flags for Dismissal 

• Patient has an extensive medical history with multiple specialists

• Normal labs or imaging despite significant symptoms

• Patient has a rare diagnosis the provider is unfamiliar with

• Strong patient advocacy or knowledge about their condition

• Prior trauma or a mental health history (often wrongly used to invalidate or claim somatic symptom origin)

In complex diseases, especially multi-systemic diseases, these are not warning signs, they are survival strategies. It is impossible to have one doctor specialize in everything. In patients with systemic diseases, these cannot be used as proof of faking. Applying such criteria without context or understanding so often causes devastating consequences.

Examples of Conditions Commonly Misdiagnosed as Factitious Disorder

Neurological and Neuropsychiatric Illnesses

• Postural Orthostatic Tachycardia Syndrome (POTS)
  Often dismissed due to normal labs and fluctuating vitals; patients are told it’s anxiety or psychosomatic.
  
  

• Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)
  Misunderstood fatigue, post-exertional malaise, and cognitive dysfunction are often blamed on depression or laziness.
  
  

• Periodic Paralysis (PPP)
  Legitimate neurological symptoms (eg. seizure-like episodes, weakness, episodic/intermittent paralysis) are often misattributed to "faking”.
  
  

• PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome) Abrupt onset of OCD, tics, seizures, psychosis or eating restrictions in children- often after infection. Symptoms are frequently dismissed as behavioral or psychiatric, delaying immune-based treatment

• Complex Regional Pain Syndrome (CRPS) Intense, disproportionate pain after injury or surgery. Misunderstood due to its severe symptoms and lack of clear imaging findings, often leading to accusations of exaggeration or faking.

Connective Tissue Disorders and Their Comorbidities

• Ehlers-Danlos Syndrome (especially hypermobile type)
  Because imaging might be normal and symptoms are widespread (e.g., pain, dislocations, GI issues), patients, especially young women are often dismissed.
  
  

• Craniocervical Instability (CCI) and Tethered Cord Syndrome
  Rare spinal disorders frequently overlooked; often causing drop attacks, paralysis and more. Patients often undergo years of dismissal before diagnosis.Often leading to permanent, avoidable damage. 

Autoimmune and Inflammatory Diseases

• Lupus (SLE)
  Known as “the great imitator.” Early symptoms are often vague and misdiagnosed as mental illness or hypochondria.
  
  

• Multiple Sclerosis (MS)
  Especially in early stages, symptoms like numbness or vision changes are easily dismissed as anxiety or stress.
  
  

• Small Fiber Neuropathy (SFN)
  Normal nerve conduction studies lead providers to overlook real pain, burning, or autonomic issues.

Infectious and Post-Infectious Syndromes

• Lyme disease (especially chronic or late-stage)
  Patients with ongoing symptoms often face accusations of exaggerating or inventing illness.
  
  

• Long COVID
  Many patients experience debilitating symptoms despite normal labs/imaging, leading to dismissal and misdiagnosis.

Gastrointestinal Disorders

• Gastroparesis
  Cyclic vomiting, nausea, and food intolerance may be seen as eating disorders or attention-seeking.

• Cyclic Vomiting Syndrome (CVS)
  Rare and often misattributed to anxiety or drug-seeking.

• Vascular compressions like Median Arcuate Ligament Syndrome (MALS), Superior Mesenteric Artery Syndrome (SMAS) or Nutcracker Syndrome Rare vascular compression syndromes causing severe abdominal pain, nausea, and weight loss. Often misdiagnosed as anxiety, eating disorders, or functional GI issues.

• Mast Cell Activation Syndrome (MCAS) Multisystem symptoms like flushing, GI upset, and anaphylaxis can appear subjective or inconsistent.

Rare and Genetic Conditions

• Mitochondrial diseases
  Progressive fatigue, weakness, and multisystem involvement with few visible markers often invite suspicion.
  
  

• Neurofibromatosis, EDS-related dysautonomia, or rare syndromes with variable expression
  Patients may be accused of exaggeration, especially when doctors are unfamiliar with the presentation and variabilities

The Devastating Toll of Misdiagnosis

Wrongly attributing real illness to factitious disorder or FDIA (formerly Munchausen syndrome and Munchausen by proxy) has led to irreparable harm—fractured families, medical neglect, permanent disability, and even death.

When clinicians presume deception instead of exploring complex or rare medical explanations, patients are stripped of credibility. Necessary treatments are delayed or denied. Children are removed from loving homes. Parents, especially mothers, are criminalized for advocating too persistently for their child’s health. The result is not just a missed diagnosis—but a cascade of trauma that extends far beyond the exam room.

Irreversible Harm

• Permanent Damage: Children misdiagnosed with FDIA have had life-sustaining treatments withheld—feeding tubes pulled, medications stopped, mobility aids removed—all under the mistaken belief that their symptoms were fabricated.12 Many experience deterioration that could have been prevented.
  
  

• Lost Lives: In documented cases, patients accused of malingering or factitious disorder later died of the very condition that was ignored. Justina Pelletier’s case drew national attention when she was institutionalized under the care of doctors who believed her mitochondrial disease was psychiatric.13 Other patients, highlighted in investigative reports by The New York Times and VICE, also died after years of disbelief and inadequate care.14
  
  

• Torn Families: FDIA accusations have led to children being placed in foster care for months or years. In some cases, families were never reunified. One mother, falsely accused of medical child abuse, spent years fighting to regain custody, even as evidence later confirmed her child’s illness.15 The emotional toll is immeasurable: siblings separated, trust shattered, and lifelong trauma instilled in both children and caregivers.
  
  

• Medical Trauma: Survivors often live with PTSD from coercive hospitalization, forced psychiatric interventions, or being labeled mentally ill for simply reporting their symptoms. These diagnoses follow them in their medical records, biasing future clinicians against them and making it harder to receive appropriate care.16
  
  

A System in Need of Reform

What begins as “erring on the side of caution” can quickly become a systemic failure when providers assume psychiatric pathology instead of acknowledging the limits of their knowledge. Without safeguards against bias, multidisciplinary oversight, or a thorough understanding of rare disease presentations, the harm caused by misdiagnosis is profound.

Misuse of factitious disorder accusations is not rare—it’s invisible, because those harmed are often silenced, discredited, or too traumatized to speak. But their stories matter. Behind each accusation is a human life. And in too many cases, that life is lost—not to disease, but to disbelief.

Diagnostic Humility and Compassion

A good clinician acknowledges what they don’t know. A normal test result doesn’t prove health, it only means that specific test didn’t reveal the problem11.

Medicine is evolving. Many conditions- dysautonomia, mast cell disease, connective tissue disorders, mitochondrial diseases- are only beginning to be understood. Dismissing symptoms as anxiety or attention-seeking not only delays diagnosis but causes direct harm to patients.

“Do no harm.” is a principle that has in many cases been lost in the medical system. Clinicians have an ethical responsibility that is often ignored. They have the duty to:

• Practice curiosity rather than judgment

• Consult specialists when cases are complex

• Understand that uncertainty is not failure, it’s part of medicine

• Center patient narratives as valid forms of evidence

• Conduct proper and extensive testing before the assumption of malingering, somatic symptoms, or factitious disorder is made
  
  

Rather than assuming social media fueling a fire of hypochondriacal patients, It’s important to recognize that patients (or their parents) with rare or chronic conditions must often become their own case managers, advocates, and researchers. Social media is a diverse platform for sharing resources, and hundreds, if not thousands of lives have been saved through the advocacy of other patients. 

Empowering each other is a radical act of care, and not something to be ashamed of. If you are a patient, continue to share vetted resources and specialist directories. Use social media to share your story, and amplify the stories of others’. Continue to build networks of support and reputable, fact-checked information. You never know who might stumble across it, and it may change their life. 

Social media has given chronically ill people something the medical system often withholds: a seat at the table. Here, we show that nobody is alone, bridge gaps in knowledge, and refuse to be erased.

Conclusion

The stigma around chronic illness, especially online, stems from fear, misunderstanding, and outdated ideas about who gets to be believed. When we misuse psychiatric labels or apply rigid theories to complex realities, we harm the very people medicine is meant to serve. 

By embracing diagnostic humility, practicing deep listening, and creating systems of support both on, and offline, we can move from a culture of blame to one of care, and ensure no one suffering in silence is ever told their pain is imaginary.

References

Footnotes

1. Levenson, J. L., & Alderman, M. “Factitious Disorder.” StatPearls (2024). 

2. Greenhalgh, T., & Rosen, R. “Patient and public involvement in chronic disease management.” BMJ 350 (2015): h2785. 

3. Ross, C. A., & LeMalefant, P. (2020). Factitious Disorder: Recognition and Treatment. Journal of Psychiatry Practice, 26(2), 104–110. https://doi.org/10.1097/PRA.0000000000000451 

4. Shapiro, J. (2016). When Doctors and Parents Disagree. NPR and The Boston Globe. https://www.npr.org/sections/health-shots/2016/12/05/504072398/when-doctors-and-parents-disagree 

5. Schlosberg, J. (2021). The Illness Is Real, but Some Doctors Thought It Was All in Their Heads. The New York Times. https://www.nytimes.com/2021/02/22/health/munchausen-misdiagnosis.html 

6. Ghorayshi, A. (2020). They Were Accused of Faking Illness. Then They Died. VICE News. https://www.vice.com/en/article/7kzddx/factitious-disorder-misdiagnosis-rare-disease

7. APSAC Taskforce. (2017). Guidelines on Allegations of Medical Child Abuse. American Professional Society on the Abuse of Children. https://apsac.org/guidelines 

8. Wilshire, C., & Kindlon, T. (2019). Medical Trauma, Stigma, and Dismissal in Patients with Chronic Illness: A Review. Health Psychology Open, 6(1). https://doi.org/10.1177/2055102919844502 

9. Dusenbery, M. Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick. HarperOne, 2018. 

10. Hoffman, K. M., Trawalter, S., Axt, J. R., & Oliver, M. N. “Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites.” Proceedings of the National Academy of Sciences 113, no. 16 (2016): 4296–4301. 

11. Nascent research on online patient communities underscores the role of peer support in chronic illness self-management (e.g., van der Hurst et al., “Online Communities for Chronic Illness Management,” Journal of Medical Internet Research, 2021). 

12. Parsons, T. The Social System. Free Press, 1951. 

13. StatPearls. “Factitious Disorder.” Levenson, J. L., & Alderman, M. Updated 2024. Available via NCBI Bookshelf. 

14. American Professional Society on the Abuse of Children (APSAC). “Practice Guidelines for the Assessment and Treatment of Children Exposed to Abuse and Neglect.” 2019. 

15. Freud, S. Introductory Lectures on Psychoanalysis. 1917. 

16. Lyons‐Ruth, K. “Effects of early experience on later psychopathology.” Clinical Psychology Review 34 (2014): 137–146. 

17. American Academy of Pediatrics. “Beyond Munchausen Syndrome by Proxy: Identification and Treatment of Child Abuse in the Medical Setting.” Pediatrics 119, no. 5 (2007): 1026–1030. 

When Mother’s Day Hurts

In recent years I have felt a pang of grief every time Mother’s Day comes around. There's so much celebration, and rightly so. Moms sacrifice so much for their children, something my own mother has proven countless times. But nonetheless, every time this day of celebration comes around my emotions are complex. I see everyone around me celebrating their mothers, I see my peers starting families and see the joy it brings them, joy that I would love to experience, and yet I know I probably won’t. 

I know I’m not alone in this. For many of us with chronic illness or rare disease, it’s a reminder of the dreams that might never unfold the way we imagined.

I’ve always wanted to be a mom. I still do. But I don’t know if my body will ever allow it. I don’t know if even if my body did allow it I would want to go through with it and pass on my genetics to my children.That’s a hard thing to admit. It’s a quiet kind of grief, one that doesn’t always get acknowledged, but lives deep inside me, surfacing when I see a baby, or a friend celebrating a pregnancy, or on Mother’s Day. 

So this post is for those of us who, like me, live with chronic conditions, disabilities, invisible pain, and who carry dreams of motherhood that may never come to fruition. 

It’s for:

• The women who’ve faced infertility caused by illness or treatment.

• The ones who chose not to pass down their genetic conditions to a child, an act of love that’s often misunderstood.

• The moms who faced down the risks and said yes to motherhood anyway.

• The women who were told by doctors that pregnancy could cost them their life.

• The disabled moms proving every day that strength doesn’t always look how people expect.

• The women who’ve had miscarriages, who tried and lost, and still carry that love every day.

• The women who don’t know if motherhood will ever be part of their story. 

In a society and culture, especially in church communities, where women are often measured by what we can produce, by how much we can give, let’s be clear:

You are not defined by your fertility.
You are not less of a woman if you never give birth. You are not saved through or because of childbirth.
You are not broken.

You are fierce. You are tender. You are valuable. You are whole.

We are more than our wombs.
More than our diagnoses.
More than what society expects us to be.

So today, while we honor mothers (as we should), I want to leave this as a reminder for every woman walking a path that looks different. 

You are not alone. You are loved. You are enough.

Poem: Hurt & Hollow

Some days, I wear my armor well.

smile through the agony, pretend this isn't killing me.

I tell myself, You're strong.

You've got this.

But other days, it all collapses, and I'm buried under the rubble of reality.

This is my life now. This is forever.

No escape.

No out.

Just this endless cycle of hurt and hollow.

I mourn the me l'll never get to be.

The one who danced through her twenties, ran marathons, chased sunsets, and loved without limits.

Now I measure my days in spoons,

And count the steps to the bathroom like they're miles

And the world keeps spinning, fast and careless, while I'm stuck here, watching it blur,

watching it leave me behind.

-Giusiana

Family of Anomalies

We are a family of medical anomalies,

stitched together not by blood,

but by scars—shared pain, shared stories,

and the unrelenting hum of hospital machines.

We are the ones who sit in waiting rooms,

arms linked by invisible threads of understanding,

while the world outside moves on,

ignorant to the battles fought in these quiet halls.

One by one, I watch my friends—my family—

slip away.

Not always to the same thief,

but always to the same indifference.

The system, built for the "normal,"

for the "fixable,"

fails them,

fails us.

I see their strength crumble,

their bodies wither,

their voices fade,

while the world scrolls past their obituaries

as if they were just another headline.

When will it be my turn?

When the time comes,

will anyone care?

Will they mourn the way my laugh echoes in the room,

the way I lit up when I spoke of hope,

or will I be reduced to just another "too complex" case,

tossed aside by a system that was never built to hold me?

Will they remember me as a warrior?

Or will my fight, my exhaustion,

be forgotten in the sea of survivors

who are glorified for beating what I never could?

Society loves a survivor’s story—

a triumph, a cure, a comeback.

But where is the love for those of us in the limbo?

The in-between?

Not beating it, not succumbing,

just existing in this perpetual war.

Where is the recognition for the ones

whose battle is not a sprint,

but an unending marathon?

And those who lose?

Who couldn’t claw their way out of the quicksand,

who slipped beneath the tide?

They are not failures.

They are not weak.

They are warriors, too.

But their stories are whispered,

not shouted.

Their names fade into shadows,

while the world claps for survivors.

We are a family of anomalies,

of fighters,

of mourners,

of ghosts.

We hold each other up as we crumble,

we cry for the ones we lose,

even as we fear the day it’ll be us.

When my turn comes,

remember me,

not for surviving,

not for succumbing,

but for enduring.

Because here in the limbo,

we are still alive.

We are still here.

And that,

that is its own kind of triumph.

-Giusiana

Poem: Caged in Cotton & Chains

They call it rest.

They call it lucky.

They call it “taking it easy.”

Like this bed is some kind of throne—

but tell me, what kind of kingdom has walls that close in?

What kind of palace feels like a prison?

What kind of mattress swallows you whole,

whispers lullabies of exhaustion,

and never lets you rise again?

This is not rest.

This is not luxury.

This is survival.

Barely.

The weight of my own bones is an anchor,

the air too thick, too heavy to lift my chest.

My muscles scream in silent agony,

each fiber unraveling like threadbare cloth.

This is fatigue that doesn’t fade with sleep,

this is pain that does not end with pleading.

This is weakness that defies willpower.

And yet, they tell me to try harder.

As if I am not already

fighting an invisible war

on a battlefield no one believes exists.

They don’t see the chains,

the ones wrapped tight around my ribs,

the ones that turn every breath into a battle.

They don’t see the shackles at my ankles,

how they keep me tethered to this bed,

this coffin-in-waiting.

They don’t see the cage

built from silence, stitched from shadows,

where the only light burns too bright to bear.

They walk past my window,

laughter drifting like ghosts through the cracks.

I watch the world spin—

faster, faster—

while I lay still.

Left behind.

Forgotten.

Dust in their rearview mirror.

I dream of movement,

of chasing the wind,

of standing without shaking,

of walking without fear.

I dream of sunlight that doesn’t burn,

of open air that doesn’t suffocate.

Of a body that is not a battle.

But here I am.

Chained.

Consumed.

Crying.

-Giusiana

Poem: I am neither beautiful, nor admirable

I am neither beautiful, nor admirable.

I am tired, and I am bruised.

The kind of tired that sinks into your marrow,

the kind of bruised that doesn’t fade,

just layers itself over and over

until your body becomes a canvas

painted in pain.

Illness is a thief.

It steals your time, your plans,

your sense of self.

It drags you down,

anchors you to hospital beds

and medication schedules,

turns your reflection into a stranger

with shadows under their eyes

and scars that tell stories

you never wanted to live.

Disease feels like screaming underwater.

No one hears you.

The loneliness wraps itself around your ribs

like a vice,

pressing until you can barely breathe.

You sit in sterile rooms

with doctors who don’t listen

or don’t know,

as you fight for answers

while your body fights against you.

And still, they call you strong.

“You’re so inspirational,” they say,

as if surviving a storm you never asked for

makes you a hero.

But you don’t feel strong.

You feel shattered.

You feel small.

You feel like a shipwreck

dragged to the ocean floor.

I am neither beautiful nor admirable.

I am tired, and I am bruised.

But maybe tired isn’t the whole story.

Maybe bruised doesn’t mean broken.

Maybe strength isn’t in the way you stand tall,

but in the way you keep standing at all.

Maybe the beauty isn’t in the fight,

but in the quiet courage of holding on.

Maybe being admirable

isn’t about being unshaken,

but about embracing the cracks

and saying, “This is me. I am here. I am enough.”

So let the world see the bruises,

let them see the weariness.

Because in the depths of exhaustion,

there’s still a spark.

And though I may not feel strong,

every breath, every step,

every whispered, “I’m still here,”

is a defiance.

A rebellion.

A testament to the soul

that refuses to give up.

-Giusiana

Poem: Burnt Out

I’m tired.

Not the kind of tired that sleep can fix,

Not the kind that a nap will erase,

But the kind that settles in your bones,

that makes your soul feel heavy,

dragging behind you like chains on cracked pavement.

Doctor appointments every other day—

waiting rooms, white walls, fluorescent lights,

cold stethoscopes and colder hands

poking, prodding, prescribing,

like I’m some machine they can just reboot.

“Try this. Try that. Let’s run more tests.”

Another needle. Another vial.

Another scan that won’t give me answers.

Just more questions. Just more waiting.

Just more of the same.

I am so sick that I can hardly sit up.

My hands shake, my body betrays me,

legs too weak to hold the weight of a life

I barely get to live anymore.

My freedom? Gone.

My dreams? Out the window.

While life moves on without me,

I stay stuck here, locked inside this failing frame,

a cage I never asked for,

a disease with no cure.

Tell me—

where is the light at the end of the tunnel?

Because all I see is more tunnel.

All I feel is more decline.

More symptoms stacked like bricks,

building walls around me,

suffocating, crushing.

I don’t want to die,

but I don’t want to live like this.

Not like this.

Not tethered to tubes and timelines,

not drowning in medical bills and broken promises.

I want to breathe without effort,

I want to move without pain,

I want to be free of this relentless, merciless, endless suffering.

I want to close my eyes and sink into the silence,

where nothing hurts,

where nothing exists.

-Giusiana

Mountains You Cannot See

I watch the world sprint by—

everyone else reaching milestones like checkpoints

on a race I never started.

Graduations, promotions, weddings… a family.

their lives stacking achievements

while I’m here

just trying to get out of bed

without breaking.

Brushing my teeth?

That’s Mount Everest.

Taking a shower?

An Olympic event.

Each move drains energy

I don’t have to spare,

but the world keeps spinning

As if I should just keep up.

They scoff and ask,

“Why do you do so little?”

And I wonder,

How do you do so much?

You run marathons

while my lungs collapse

on the first breath.

You conquer your days

while my victories

are getting dressed

and showing up

in any way I can.

But I feel it,

that creeping voice

that whispers,

Lazy.

Pathetic.

Not enough.

It echoes louder

when I see your effortless pace

while I’m frozen in slow motion.

But it’s not my fault.

And maybe,

one day, I’ll believe that too.

Because surviving

in this body

is a full-time fight.

I’m not lazy—

I’m climbing mountains

you can’t see.

-Giusiana

Scarred But Unbroken

They call it rare,

like it’s something precious.

But there’s no gold in this isolation,

no treasure in the silence

of empty waiting rooms

and unanswered questions.

Doctors stare at charts,

puzzled eyes scanning

a body that doesn’t follow

the rules they know.

Each test is a threat—

needles, scans,

a parade of possibilities

I don’t want to name.

The fear tastes bitter,

but I swallow it anyway,

because what choice do I have?

Friends try to understand,

but how can they?

Their bodies obey,

while mine rebels.

Their world is certainty—

mine is shadow.

I speak in terms they can’t translate,

and loneliness echoes back.

There’s grief in the knowing—

no cure waits at the finish line,

no magic fix to make me whole.

Just the heavy truth

that this rare thing I carry

is forever.

It’s a burden I never chose,

but it’s mine to bear.

Still, I stand here,

scarred but unbroken,

learning to live in a world

that doesn’t see me

but can’t silence my voice.

Because being rare

may be lonely,

but it’s also strength

they’ll never understand.

-Giusiana

A Name for the Pain

They said it out loud this time.

Not a whisper, not a maybe,

but a weight dropping heavy into my lap,

like bricks I didn’t ask for.

And suddenly, it’s real.

It has a name now,

a name I didn’t want to know,

a name that comes with side effects

and risks and warnings

like a storm I’ve been pretending wasn’t on the radar.

I told myself it wasn’t real.

It was just stress.

Just in my head.

Just my imagination stitching threads of discomfort

into something bigger.

But the doctor said it.

The doctor said it.

And now it’s here,

gnawing at the edges of my life,

carving space in a body that already feels

too full of battles I didn’t enlist for.

One more diagnosis,

one more label,

one more thing to grieve.

They say it’s validation,

but it feels like violation.

Because now it’s not just me and my fears.

It’s charts and tests and treatments,

and their voices telling me what I already knew

but didn’t want to hear.

It’s the grief of losing the lie

I told myself—that maybe I was fine,

maybe I was just being dramatic.

But I wasn’t.

I’m not.

This is real.

This is dangerous.

This is the sharp edge of truth,

cutting through the thin skin of denial

I wrapped myself in for so long.

How many times can I do this?

How many times can I let them

hand me another diagnosis

like a letter sealed with bad news,

telling me what’s wrong

when all I want is for something, anything,

to be right?

I try to breathe through it,

but the air feels too thick,

my chest too tight.

Grief is a quiet scream inside me,

mourning the health I never had,

the life that keeps slipping farther away.

It’s an endless funeral for what I could’ve been.

They don’t tell you about the grief,

how it comes in waves,

crashing over you when you least expect it.

How it tastes like salt in your throat

and burns like the tears you don’t want to shed

because crying feels like surrender.

But I’m not just tired.

I’m bone-deep, soul-heavy weary.

Because every new name for the pain

reminds me of all the ones before it,

and all the ones still waiting in the shadows,

ready to pounce.

I want to scream,

but my voice is hoarse

from all the times I’ve whispered to myself:

“It’s okay. It’s okay.”

It’s not okay.

It’s never been okay.

-Giusiana

Slipping Beneath the Waves

Some days, hope rises,

a fragile whisper that maybe, just maybe,

there’s a world beyond this cage.

The pain shrinks to the edges,

a shadow you can almost ignore.

But today is not that day.

Today, I am drowning,

dragged under by waves

of relentless symptoms,

each breath heavy, each moment cruel.

The air tastes like despair,

and I remember:

there is no way out of this sea.

A friend slipped beneath the waves today.

Another light extinguished,

another soul consumed

by the same relentless tide.

How many more will I lose?

How many more before it’s my turn?

The reflection is sharp:

this body is both a prison and a grave.

It holds me, but barely.

What I would give—

oh, what I would give—

for just a single moment

without pain,

without the weight of this disease.

To breathe without shackles,

to move without chains,

to simply exist

in a world that doesn’t hurt.

But today, I only exist.

Hopeless.

Watching the water rise.

-Giusiana

The Second Christmas

The tree still glows, its branches dressed in light,

But shadows linger deep inside tonight.

This is the second Christmas I’ve endured,

Where joy feels distant, stolen, obscured.

I am barely here—my body worn,

A fragile vessel weathered and torn.

Seizures claim many moments, confusion takes the rest,

And I, a ghost of who I was, try my best.

The gifts lie waiting, wrapped with care,

Yet my hands are too weak to meet them there.

The feast, a symphony of love and art,

Sits untouched as this illness tears me apart.

I retreat to my room, away from it all,

The lights are too bright; the sounds only call

To the pain in my head, sharp and unkind—

A world too harsh for this fragile mind.

This isn’t how Christmas was meant to be,

Not this quiet ache, this silent plea.

I wish I could rise, I wish I could mend,

But I wonder instead if this fight will end.

No star guides me, no warmth to defend,

Just the ache of a season I cannot transcend.

Christmas fades like a song turned to air,

Leaving only the grief I can hardly bear.

-Giusiana

Oddmall 2024: A heartwarming story

This weekend I was at selling at Oddmall, a huge vendor event hosted at the fairgrounds. After last year’s success, I was starting to feel quite disappointed with the results of this weekend - I was in so much pain, hardly selling anything and I barely broke even with supply costs.

At a typical market or fair I usually get quite a few “I like this” or “love your work” and even some people commenting on how touching it is.

But what really means a lot to me, is the people I meet who really feel my artwork. The people who it touches. The people who share their stories with me.

Saturday evening I was approached by a mom and her daughter. The daughter (probably tween/early teen?) came up to me and said “I want you to know you’re not alone in some of the things you deal with, I really understand your paintings”. Moments like this are what I look forward to while selling. Seeing that my art isn’t meaningless, it makes a difference. I thought that was the end of our interaction…

To my pleasant surprise she returned Sunday and started talking with me again. She quite shyly handed me a set of earrings, a drawing, and a small ziplock of change. Her mom told me that when they got home last night she read my bio and saw my gofundme for medical costs. She wanted to help, and scoured the house for whatever she could find to help with my medical costs. She created a beautiful and heartfelt drawing for me and came all the way back the next day to give them to me.

Today, this little girl, with her drawing, her ziplock of hard-searched 82 cents, and her big heart made the whole weekend worth it. All of the pain, the medical episodes, the stress and the lack of financial success don’t matter, what matters is that someone felt less alone because of my work. It always means a lot to me when people are touched by my art, but this interaction brought tears to my eyes. I was that girl once, who was living with something that it seemed no one understood. Sick. Invisible and unseen.

She said I made her feel seen, but little did she know that she made me feel seen too. That conversation has been replaying in my mind ever since she left. Her drawing will now be hung above my desk and never forgotten.

Juniper, if you’re reading this, thank you for being brave enough to talk to me. You’re a beautiful and thoughtful person. I may not know what you go through, but I know you’re incredibly strong. Don’t ever give up or lose hope. (Also, contact me, I have something I’d like to give you)

- Giusiana

Poem: Broken Promises

You promised me safety,  

swore you’d protect me from the dark,  

but it was your hands,  

your voice,  

that tore me apart.  

I was weak,  

barely holding on,  

a medical crisis pulling me under,   

you said it was for my good,  

but I know it was for your hunger.  

You were the one I loved,  

the one I gave my trust.  

But when I was at my lowest,  

you turned me into dust.  

You called it love,  

said it was care,  

but what kind of love leaves bruises  

in places I can’t even share?

You said I was crazy,  

possessed by demons I couldn’t see.  

But it was you all along—  

it was always you,  

breaking me.  

I can still feel the betrayal,  

the weight of your lies,  

as you whispered sweet nothings,  

while slipping off with other women  

behind my eyes.  

You cheated,  

you lied,  

then called me insane.  

Twisted the story so well,  

they took your side  

while I drowned in the blame.  

You turned our friends against me,  

made them believe your deceit.  

I was the broken one,  

the liar,  

the one who couldn’t see.  

But I see you now.    

Playing the part of a saint,  

while you fed on my pain,  

leaving me hollow and faint.  

I didn’t want to believe it,  

that you could be this cruel.  

But love isn’t love  

when it’s used like a tool.  

I’m alone now,  

with this truth like a scar,  

but I’ll carry it,  

I’ll survive it—  

even if you go too far.  

You vowed to protect me,  

but instead you tore me apart.  

And now I don’t know how to trust,  

because the one who broke me,

was the one I gave my heart.

- Giusiana

Poem: Want to Live

I want to live,  

not just survive,  

not just tread water,  

gasping for breath in the ocean of a body that feels like it's betraying me.  

I want to live.  

Not in the numbness of "getting by,"  

not in the shadows of pills and procedures,  

of "let's see if this works," and "maybe next time,"  

of the invisible chains that tie me to my bed when the world expects me to run.  

I want to live.  

I want to feel every sunrise deep in my chest,  

not as another battle I have to fight,  

but as a gift—wrapped in fire and hope.  

I want to wear joy like a second skin,  

not a mask I put on to make you comfortable.  

You ask me how I’m doing,  

and I tell you “fine,”  

because you’re not ready for the storm behind my eyes.  

You’re not ready for the truth that “fine” means more than I can explain.  

That “fine” is the warrior’s whisper after a hundred sleepless nights.  

That “fine” is not good enough.  

Not for me.  

I want more than fine.  

I want laughter that makes my ribs ache in the best way.  

I want to dance in this broken, beautiful body,  

even if it’s only in my mind.  

I want to stretch out my hands and feel the world,  

not through a fog of fatigue,  

but with the fire of a life fully lived.  

I want to live,  

not just survive.  

I want to say “yes” without hesitation,  

to plans that don’t come with a checklist of "what-ifs."  

I want to dream big without calculating the cost of my energy like it’s currency I never have enough of.  

I want to be more than my limits,  

to rise above them,  

to shatter the ceiling that keeps me from reaching my own sky.  

Because I am not my illness.  

I am not my diagnosis.  

I am not the quiet resignation of survival,  

but the loud roar of a life that refuses to shrink.  

I want to live.  

And I will.  

With this body, with this pain, with these scars.  

I will live.

- Giusiana

Poem: Glass

I’m made of glass.

Thin. Brittle. Fragile.

Every step is like a gamble with gravity—

joints slipping from their sockets like they were never meant to stay,

like my body forgot how to hold itself together.

I wake up, and the first thought is: What will break today?

Will it be my shoulder?

My knee?

Or my heart, beating too fast like it’s trying to outrun this shell of skin I’m trapped in?

I’m glass that cracks under pressure,

hairline fractures forming from these dislocations,

fingers that bend backwards,

legs that give out without warning.

I’m standing on the edge of myself, waiting for the cracks to reach their breaking point,

to shatter.

And when it comes— it always comes—

it’s not a neat break.

It’s fire through my veins,

burning pain that screams louder than I can,

pain that hums beneath the surface,

a constant reminder that I am not whole.

I faint from a heartbeat that races for no reason,

seized by my body’s betrayal.

Paralyzed by the weight of it,

the world spinning away as I lie still,

willing myself to move,

but there’s nothing there.

No strength. No power.

I’m a glass sculpture on a ledge,

tilting, ready to fall.

And every breath is a prayer—

Please, not today. Not today.

But the thing about being glass is,

even if you don’t break,

the cracks are always there,

just waiting.

And I’m scared of what happens when I finally do shatter.

Because what then?

What’s left of a body already in pieces?

What’s left when you’ve been holding on so tight

just to survive?

I’m fragile, but I’m still here.

Broken, but unbreakable.

….For now

-Giusiana

Poem: Slipping

I’m dying.

It’s not a matter of if, but when—

my body is betraying me,

cells turning rogue, organs fading,

pain etching itself into my bones,

dull, constant, like background noise

I can’t escape.

My blood doesn’t flow like it used to;

my breath catches, stumbles,

like a body that’s forgotten how to live.

Nobody cares.

Not really.

They see me breaking down,

watch my hands tremble,

my skin grow pale and fragile as paper,

but they’re too busy, too far gone

into their own invincibility

to recognize how close death stands to all of us.

The doctors—

they shrug,

say there’s always someone worse.

“You’re not there yet,”

as if that should bring me comfort.

Not yet, they say,

like my organs collapsing under their own weight

is just another plot twist.

Like I should be grateful

for another day of walking this tightrope,

even though the fall is inevitable.

They don’t understand.

They don’t get that the people who are “worse off than me”

were once where I stand—

on the edge,

still able to fight,

but slipping, always slipping.

If they had been saved then,

in this stage where the pain is chronic but not fatal,

maybe they wouldn’t be on the ventilators,

under the knife,

past the point of no return.

But nobody listens

until you’re too far gone to hear them.

By then, it’s too late to go back.

It’s not a matter of if, but when

the disease will win,

when my cells will finish what they’ve started,

and no amount of white coats or sterile rooms

can pull me back.

I’m dying,

my body failing,

and nobody will reach out

until the “worse” becomes “worst.”

But the when is creeping closer,

its shadow growing,

and no one cares until it’s too late.

Too late for me,

too late for those who come after,

falling like I am,

invisible until we hit the ground.

Poem: Borrowed

I wake up in a body that feels borrowed,  stitched together with fragile thread,  ready to unravel at the seams.  

My joints slip like they’re strangers to each other—  a shoulder pops out when I reach,  a knee buckles when I stand,  

and I’m just left holding myself together  like broken glass,  pretending the pieces still fit together. 

My spine pulls tight,  tension building at the base,  like I’m being torn apart from the inside.  

My neck, so unstable, each movement a gamble,  l feel I might lose my head,  like there’s no strength left to hold me up.

Pain, sharp and burning,  crawls through my nerves like wildfire.  Some days it’s a dull ache,  others, it’s a scream that never quiets.  

I can feel it in my bones,  my skin,  my mind,  this constant reminder — that I’m fighting a war I never signed up for.

paralysis—  it comes without warning.  One minute, I’m walking,  breathing,  existing,  and the next, my legs give out,  my arms go limp,  and I’m left trapped,  helpless in my own skin.  

There’s no telling when it’ll come back—  if it will come back.  

My body holds its secrets close,  I’m never clued in on the plan.

My brain is on fire, flames licking through every thought, a burning haze that clouds my mind,

makes me forget words, forget faces, forget myself. It’s like being here, but not here, present but slipping, and I’m terrified of what I’ll lose next.

Will I wake up tomorrow and not remember how to live in this body?Not remember how to fight?

My heart races when I stand, when I move, when I try to live like nothing’s wrong.

But something’s always wrong. It beats too fast, too hard, too eratically

and I can feel it pounding, like it’s trying to escape, like it knows something I don’t.

The world goes black, everything fades, and I’m gone, my body’s decided it’s had enough, it can’t handle gravity, can’t handle life on its feet.

And when I come back, it’s like rising from a deep, dark sea, gasping for air, wondering how long I’ve been gone. 

Nausea is my constant companion,  stomach twisting,  food turning to lead.  

I’m hungry,  but my body doesn’t know what to do with it.  Every meal is a question,  a roll of the dice—  will I keep it down,  or will it turn on me,  another betrayal in a body full of them?

When I finally eat, there’s the looming threat, the breath that catches in my throat,  the rush of heat,  the swelling fear that something as simple  as a bite, a scent, a touch  

could close my airway,  could turn my body against itself  in an instant.

Fear walks beside me,  a shadow I can’t shake.  It’s in the back of my mind — when I move, when I sleep,  when I dare to dream of a life beyond this one.  

What if today is the day?  What if my body decides to quit?  What if I’m too broken to keep going?

 loneliness—  Because no one sees it,  this constant war I’m waging.  

No one feels the dislocations,  the nerve pain,  the paralysis that comes and goes like a cruel joke.  

They don’t hear the pounding heart,  the fog in my mind,  the nausea that twists me from the inside out.

I’m here, but I’m alone,  fighting battles no one knows exist,  living in a body that looks healthy to the untrained eye, The body that’s become my enemy.  

And every day, I wonder how long I can hold on,  how long I can fight a fight with no end in sight.

-Giusiana 

Poem: Rare

I wake up each day,  knowing that I'm rare—  

but not the kind of rare you frame on a wall  

or keep locked in a glass case.  

I am rare in the way that no one understands,  no one knows my name  

except when it's whispered between white coats  

over flickering screens,  

no cure on the horizon, no relief in sight.

They call it "chronic,"  

like it's just something to live with,  like a stain you can’t wash out.  

But it’s not just a word—  

it’s a shadow stitched to my spine,  a ghost that haunts my veins,  

Shooting through my body like faulty wires.  

They say it's not deadly—  

not yet, not now.  

But the tightrope I walk,  

day after day, could snap  

with any whim of this disease. 

a misstep, a whisper from my cells that says,  

“This is the moment."

The fear isn't sharp—it's dull,  

grinding me down to dust,  slowly,  

until I wonder who I am under all this weight.  

I am waiting—  

but for what?  

For life? for death? for some middle ground

that doesn't exist in the language they speak.

I could scream, but no one would hear—  

because when you're rare,  you're invisible.  

I am alone in this crowd of faces,  

trapped in a cage of flesh and bones,  

and all their eyes see are symptoms,  but none of them see ME

How can I explain what it's like  

to live every moment knowing it could be your last—  

but also knowing it probably won’t?  

To have the clock ticking, but never see the hands move.  

It’s like drowning in air,  surviving in fragments,  

breathing in the fear, exhaling the unknown.

I am rare—  

a curiosity in the corner,  a question without an answer,  

and I wonder, how long can I hold on  

to a life that is neither life nor death  

but something in between?

There’s no finish line,  

no light at the end of this tunnel.  

Only shadows.  

Only the quiet ache of knowing  

that I will keep walking, keep fighting,  

keep breaking down  

until there is nothing left  of me

Only this rare thing I have become.

-Giusiana

Poem: Unsafe Place

You were my safe place,  

my harbor in the storm.  

The vows you whispered,  

meant to shield me from harm.  

I trusted you—  

with my body, my soul, my life.  

But now your hands,  

the ones I held with love,  

became knives.

I was fragile, broken,  

in a crisis you swore you’d see me through.  

But you shattered me,  

in the quiet of the night,  

when I could barely fight,  

and now I don’t know what’s left to do.  

You said you’d never hurt me.  

That’s what lovers say.  

But you tore me open,  

in the darkest way.

How do I heal,  

when the wound wears your name?  

How do I feel,  

when love and betrayal feel the same?

I’m alone now,  

but even in the silence,  

your ghost lingers near.  

The man I loved, the man I trusted,  

became my deepest fear.

What do I do with these memories,  

with the way your touch haunts my skin?  

I never thought I'd fear the one  

who promised to always let me in.  

But you left me hollow,  

left me torn in two—  

how do I move forward,  

when the one who broke me  

was you?  

-Giusiana