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:
Exempt from normal responsibilities (like work or school)
Not blamed for their condition
Obligated to try to recover
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
Levenson, J. L., & Alderman, M. “Factitious Disorder.” StatPearls (2024).
Greenhalgh, T., & Rosen, R. “Patient and public involvement in chronic disease management.” BMJ 350 (2015): h2785.
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
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
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
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
APSAC Taskforce. (2017). Guidelines on Allegations of Medical Child Abuse. American Professional Society on the Abuse of Children. https://apsac.org/guidelines
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
Dusenbery, M. Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick. HarperOne, 2018.
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.
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).
Parsons, T. The Social System. Free Press, 1951.
StatPearls. “Factitious Disorder.” Levenson, J. L., & Alderman, M. Updated 2024. Available via NCBI Bookshelf.
American Professional Society on the Abuse of Children (APSAC). “Practice Guidelines for the Assessment and Treatment of Children Exposed to Abuse and Neglect.” 2019.
Freud, S. Introductory Lectures on Psychoanalysis. 1917.
Lyons‐Ruth, K. “Effects of early experience on later psychopathology.” Clinical Psychology Review 34 (2014): 137–146.
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.
