When Illness Becomes Identity: POTS, hEDS, Mold, Social Contagion, and the Market for an Answer
As an observer of the human condition, my social media feed is a strange epidemiologic map.
POTS. Hypermobile Ehlers-Danlos syndrome. Mold toxicity. Dysautonomia. Mast-cell disorders. Chronic fatigue. Brain fog. ME/CFS. CRSP. Food intolerance.
A victim. A new specialist. Another test. A physician who did not listen. Then one who did. A diagnosis. A community. An epidemic.
The pattern raises a question medicine should not dismiss simply because it makes us uncomfortable: Are we witnessing a greater awareness of overlooked diseases, or are we also watching symptoms, diagnostic narratives, illness identities, and treatments spread across social media?
Both can happen. Both can be true. But are they?
The disease can be real. The suffering can be real. And something social can still grow around both.
First, These Disorders Are Real
POTS is real. Hypermobile Ehlers-Danlos syndrome is real. Mold can affect human health.
Postural orthostatic tachycardia syndrome, or POTS, is a recognized autonomic disorder that can produce tachycardia, lightheadedness, fatigue, exercise intolerance, cognitive symptoms, and substantial functional impairment. A large online survey of 4,835 physician-diagnosed patients found that 94% were female and 93% were White. Because this was an online community-based survey, those numbers should not be mistaken for a perfect population estimate, but the female predominance is difficult to ignore. PubMed
Hypermobile Ehlers-Danlos syndrome (hEDS), is a genetic condition that affects the body's connective tissue (the "glue" that holds things together) as well as the joints, muscles, skin, and other systems of the body. The hallmark of hEDS is an abnormal looseness of all joints throughout the body.
But hEDS has a unique diagnostic challenge.
Unlike other recognized EDS subtypes, hEDS still has no established molecular genetic test to confirm the diagnosis. Its etiology remains unknown, and clinicians diagnose it using history, physical findings, established clinical criteria, and exclusion of competing disorders. GeneReviews estimates its prevalence at roughly 1 in 3,100 while noting that underdiagnosis remains likely. NCBI
That does not make hEDS imaginary. Many diseases require clinical judgment.
It does, however, leave more room for differences in interpretation, diagnostic thresholds, referral patterns, self-identification, and clinician preference. It also leaves room for genuinely affected patients to be missed.
Could this contribute to the apparent rise in hEDS diagnoses? Possibly.
We cannot say the absence of a genetic marker caused the rise. Greater awareness almost certainly identifies people whom medicine previously missed. But awareness should not become the automatic explanation for every change in diagnostic prevalence.
A large U.S. claims analysis adds another piece to the demographic question. Among almost 20,000 young patients coded with hEDS, 77.3% were female. That does not tell us why. It tells us that the sex distribution is not something TikTok invented. PubMed Central (PMC)
Mold: Common Exposure, Real Disease, and an Expanding Explanation
The intersection of real medical treatment, common everyday environmental exposures, an unclear connection to mold exposure, and the expanding wellness industry is best illustrated by mold's widespread presence.
Mold is everywhere.
Mold is present both inside and outside homes. Mold can enter a building through open doors, windows, or ventilation systems. You may bring mold into your home on your shoes, clothing or pet. Wherever there is enough moisture to support its growth, mold will grow. Most people breathe in mold spores with no adverse effects. CDC
That does not make mold harmless.
Molds are legitimate allergens. A medical review estimated that about 5% of people will experience allergic airway symptoms related to mold during their lifetime, and noted that outdoor molds generally represent more important allergens than ordinary indoor exposure. PubMed
For someone with asthma, the impact can be much greater. The CDC recognizes associations between damp indoor environments and coughing, wheezing, allergic rhinitis, worsening asthma, new-onset asthma, hypersensitivity pneumonitis, and respiratory problems. CDC
Older epidemiologic work estimated that dampness and mold exposure may increase a variety of respiratory and asthma-related outcomes by roughly 30% to 50%. One population-attributable model estimated that approximately 21% of current U.S. asthma cases could be attributable to residential dampness and mold. That 21% is an epidemiologic estimate based on exposure and risk assumptions. It does not mean a physician can look at five people with asthma and declare that mold caused one of the cases. PubMed Central (PMC)
At the severe end are invasive mold infections. They are real. They can be fatal. And they are rare.
The CDC states that most people inhale mold spores every day without becoming sick. Invasive mold infections predominantly threaten people with weakened immune systems, including some patients receiving intensive cancer treatment, stem-cell or organ transplant recipients, and others receiving substantial immunosuppression. CDC
We now have a clinical spectrum relevant to clinicians: common exposures that cause no symptoms, allergic and respiratory diseases, asthma worsening (asthma exacerbations), hypersensitivity reactions, and serious invasive infections in vulnerable patients.
Then we enter much less settled territory.
Fatigue. Brain fog. headaches. Mood changes. Gastrointestinal complaints. insomnia. Generalized pain. Hormonal symptoms. Memory problems. A broad collection of nonspecific symptoms increasingly becomes attributed online to “toxic mold.”
That is where the science becomes less accommodating.
The American Academy of Allergy, Asthma & Immunology (AAAAI) has warned about marketed urine mycotoxin testing, noting the lack of standardization, the possibility of false-positive and false-negative results, and the absence of established thresholds defining harmful levels in the body. AAAAI also points to functional-medicine providers offering these tests alongside detoxification programs and to companies selling them directly to consumers. AAAAI
ACMT (American College of Medical Toxicology) also has taken a strong stance on this issue since 2025. ACMT states that sufficient scientific evidence confirms allergic reactions and respiratory issues caused by damp or moldy indoor environments. However, it further asserts that "available" toxicological evidence does NOT indicate that typical exposure to mycotoxins through indoor inhalation would result in systemic toxicity.
In addition, ACMT identifies unvalidated methods for diagnosing these exposures and unproven "detoxification" remedies as inappropriate and burdensome. ACMT
The patient may still be sick.
The building may need remediation.
The mold may be worsening asthma.
But none of those facts explain every symptom that patient has.
There is also a basic prevalence problem worth asking about. If mold exposure is nearly unavoidable, while broad systemic “mold illness” appears concentrated within a much smaller and increasingly visible population, what explains the difference?
Susceptibility may explain some of it. Allergic disease explains some. Respiratory illness explains some. Immunosuppression explains a small and serious subset.
But exposure alone cannot answer the question.
Neither can a commercial test whose relationship to disease has not been established.
When Uncertainty Becomes a Market
Functional medicine is not the enemy. Clinicians under that umbrella pay close attention to nutrition, exercise, sleep, metabolic health, medication effects, stress, and lifestyle. Conventional medicine has not always handled these areas well.
There are thoughtful functional-medicine physicians. There are thoughtful chiropractors. Thoughtful clinicians exist in almost every corner of healthcare. And then there is the fringe.
One pattern appears in the chronic-illness stories crossing my feed. The physicians who failed (per the afflicted) to listen tend to be conventional clinicians. The person who listened is often a functional-medicine physician, integrative practitioner, naturopath, chiropractor, or clinician operating farther outside the traditional medical pathway.
That observation is non diagnostic. But it points in a direction. Patients who feel dismissed are going somewhere else. And an industry is waiting when they arrive.
Functional Medicine Is No Longer Fringe
A 2021 industry report claimed that average monthly functional-medicine job openings on the Integrated Connections employment platform increased 163% in one year, while the number of functional-medicine-trained physicians had increased 96% over five years. It also reported that more than 80% of its functional-medicine job opportunities were in private practices. PR Newswire
Those numbers came from organizations operating within the functional-medicine industry, not from an independent federal workforce census.
The direction is hard to miss. Demand grew. Training grew. Private practice grew. Patients were searching for alternatives.
Money followed demand. Empathy does not validate a mechanism. Validation does not turn a hypothesis into biology.
Spare Me the “Root Cause” Lecture
This is where someone tells me functional medicine is different because it searches for the root cause, while conventional medicine treats symptoms.
I know the argument. I know the language. I know why it sells.
What I reject is the verbal trick buried inside it. Modern medicine spends enormous amounts of time searching for causes. Infectious-disease physicians identify pathogens. Oncologists search for driver mutations.
Endocrinologists investigate hormonal disorders. Cardiologists investigate ischemia and electrical abnormalities. Neurologists localize lesions. Geneticists identify pathogenic variants. Pathologists determine what biological process produced disease.
We already have language for this. Etiology. Pathogenesis. Pathophysiology.
Medicine did not forget causation until functional medicine rediscovered it.
“Root cause” becomes a catchphrase when it creates a false choice between enlightened clinicians searching for causes and conventional clinicians interested only in suppressing symptoms. Modern medicine has plenty to answer for, but abandoning causation is not one of its defining principles.
Conventional medicine often fails elsewhere. Care becomes fragmented. Visits become rushed. Patients feel brushed aside. A physician reaches the edge of available evidence and says, “I don't know.” That answer is frustrating.
Sometimes it is also correct. Replacing uncertainty with certainty does not produce better medicine. Sometimes it produces better marketing.
“Root cause” is not a medical specialty.
Test enough biological variables and eventually something will fall outside a reference interval. The difficult part is not finding an abnormal number.
It is proving that the number explains the illness.
Wellness Has Become a Consumer Identity
This is happening inside a much larger cultural shift.
Health is no longer something many people think about primarily when they become sick. It has become something to optimize, measure, supplement, scan, monitor, score, and purchase.
McKinsey stated that consumers in America are currently spending more than $500 billion each year to be "well". Gen Z and millennials make up about 36% of all U.S. adults but account for more than 41% of all the money spent each year on being "well". McKinsey & Company
Nutrition. Supplements. Sleep. Mental health. Fitness. Gut health. Hormones. Wearables. Longevity. Aesthetics. Preventive imaging.
The doctor's office no longer owns the health conversation.
The watch measures heart rate. The ring measures sleep. The glucose monitor charts metabolism. The app grades recovery. Commercial laboratories offer panels. Consumers purchase genetic tests. Some now buy advanced imaging before a physician has identified a disease worth imaging.
Some of this is useful. But more measurement produces more findings. The human body contains enormous normal variation. Once we interrogate enough physiology, the challenge stops being whether we can find something outside a reference range.
The challenge becomes determining whether it means anything.
That message is harder to market than: We found the problem.
Social Media Supplies the Audience
People no longer learn about disease from physicians, textbooks, public-health agencies, and patient organizations. They learn from one another.
Influencers. Creators. Peers. Someone whose joints bend the same way. Someone whose heart races when she stands. Someone who has the same fatigue, the same nausea, the same brain fog.
A systematic review published in Social Science & Medicine found that health influencers can alter health behavior in both positive and negative directions, although the authors also emphasized major limitations in much of the available research. ScienceDirect
By the time a product is launched, the audience has already selected itself. They have symptoms. They are dissatisfied with conventional medicine. They want an explanation for their illness. And they identify with the storyteller.
The seller no longer has to find a vulnerable audience. The platform has already assembled it.
The Human Bell Curve Was Always Here
Chronic-illness bios often contain other identifiers: neurodivergence, disability, alternative subcultures, sexual or gender identities, unconventional lifestyle identities, dietary identities, political identities, and personality descriptors.
Sometimes several appear together. I am not interested in deciding which identities society should consider conventional.
People vary. That is biology.
Temperament varies. Sociability varies. Conformity varies. Sensation seeking varies. Anxiety varies. Sexuality varies. Personality varies. Human beings occupy countless overlapping distributions. Some people fall close to the center of a given distribution.
Others occupy the tails.
Neither position is good or bad. Different does not mean defective. Nor does uncommon mean enlightened. The scientific question is not whether those people deserve acceptance.
Of course they do.
The interesting question is why certain identities, diagnoses, communities, and explanatory systems appear to cluster online. My feed makes the overlap look enormous.
The internet did not create the tails of the human bell curve. It allowed the tails to find one another. That can be protective. Someone who spent years thinking she was alone can discover thousands of people like herself.
It can also distort perception.
Spend enough time inside a selected community and something uncommon in the general population begins to look universal. That is not pathological.
It is human social organization accelerated by software. Humans influence humans. Language spreads. Fear spreads. Behavior spreads. Fashion spreads. Beliefs spread. Generosity spreads. Even happiness can spread through social networks. The problem is that happiness has competition.
Long Before Le Roy, People Danced
In the summer of 1518, Strasbourg experienced one of history's strangest recorded epidemics.
People danced.
Not for celebration.
They danced with compulsion.
Historian John Waller describes hundreds becoming caught in what became known as the dancing plague, or choreomania. The Strasbourg episode sat within a longer history of similar dancing outbreaks in central Europe. PubMed
There was no TikTok. No Instagram. No influencer. There were streets, neighbors, religion, rumor, fear, observation, culture—and human beings. The explanation reflected the world people experienced. Saints. Curses. Divine punishment. Possession.
Human beings do not tolerate unexplained suffering well. When biology cannot provide an answer, culture often fills the space.
Then Came Le Roy
Five centuries later, another cluster appeared in a very different place.
Beginning in 2011, a cluster of adolescent girls attending a high school in LeRoy, New York began developing facial tics, muscle spasms/twitches, garbled/abnormal speech patterns, abnormal movements and in some of these cases, additional neurological symptoms.
By early 2012, New York State Health Department officials had concluded that this was a case of Conversion Disorder. The families disputed the diagnosis. As environmental theories circulated, physicians continued to discuss possible alternative diagnoses.
National media coverage ensued. PubMed Central (PMC)
The symptoms were real. The argument concerned their origin.
More recent review of the patients describes the episode as mass psychogenic illness, with presentations expanding in some cases into syncope, psychogenic nonepileptic seizures, and migraine. Investigators reported that extensive laboratory and environmental testing failed to establish an alternative explanation. PubMed Central (PMC)
Psychogenic does not mean pretending. The brain is part of the body.
Expectation can change physiology. Fear changes physiology. Stress changes physiology. Observation can change behavior. Functional neurological symptoms do not require conscious fabrication.
And social transmission did not end with Le Roy.
During the COVID-19 era, neurologists began describing adolescents, predominantly girls, with sudden functional tic-like behaviors that differed from classic Tourette syndrome. One published case series described six teenage girls with explosive-onset functional tics. Everyone reported exposure to the same social-media personality before symptom onset. PubMed
That does not prove that POTS is contagious. It does not prove that hEDS is psychogenic.
It does not prove that someone concerned about mold is imagining symptoms. It proves something narrower and harder to dismiss.
Human symptom expression can be influenced.
Once we accept that, asking whether social influence can also shape symptom interpretation, diagnostic pursuit, or illness identity becomes a legitimate scientific question.
Social Media Removed the Geography
Strasbourg required a city. Le Roy required a school.
People sharing physical space: a village, convent, factory, military unit, classroom, or workplace had a geographic and defined network.
Social media removed that constraint.
Now the person describing the symptom can live three thousand miles away. You can watch her. You can compare her symptoms with your own. You can read thousands of comments saying: I have this too. You can learn the vocabulary. You can learn the diagnostic criteria.
You can learn the tests.
Social contagion once depended on proximity. Now it can depend on attention.
Why Doesn't Happiness Win?
Because the human brain does not assign equal weight to every piece of information.
Negative information often captures attention.
Researchers studying more than 370 million headline impressions found that negative words increased click-through rates, while positive words reduced them. In an average-length headline, one additional negative word increased clicks by about 2.3%. Nature
There is an evolutionary logic to this. Missing something pleasant did not kill our ancestors.
Diagnosis Can Become a Floor
Life is difficult. Housing is expensive. Careers are uncertain. Relationships have changed. Traditional community structures have weakened. Young adults compare themselves not with five neighbors but with thousands of curated lives every day.
Some struggle.
Some become sick.
Some fail.
A diagnosis can provide an explanation. A floor. I am not failing to launch; I have a chronic illness. I am not unable to maintain a job; I have dysautonomia. I am not exhausted without explanation; I have mold illness. I was not wrong when ten physicians disagreed with me; the eleventh physician believed me.
Medicine has dismissed patients.
Women can point to a long history of symptoms being minimized, psychologized, or attributed to something else. But we make the opposite error when we assume that the final clinician in a diagnostic journey must be correct simply because that clinician supplied the explanation the patient wanted.
Persistence is not proof. Neither is validation.
Is there functional protection?
I have been exposed to mold; I have experienced excessive fatigue. I have risen from a seated position and become dizzy. But I have responsibilities. I have had COVID and a host of other ailments - as a nurse, my exposure is far greater than the average person.
But I have a family. Is responsibility immunity?
Does being functional somehow give me genetic protection against POTS, hEDS, dysautonomia, or the effects of living around mold? Of course not.
Function is not immunity.
Employment is not a biomarker. But it is a social and economic function indicator.
Work ethic is not a negative tilt-table test.
Saying that exercise causes extreme or worsening fatigue does not establish ME/CFS; it identifies a symptom that may resemble post-exertional malaise but attributing that symptom to ME/CFS without the full diagnostic picture is not science. But it is a social tolerance indicator.
People with POTS work. People with hEDS raise families, become nurses, physicians, teachers, business owners, tradespeople, and caregivers. Others with the same diagnoses experience profound disability.
Disease severity exists on a spectrum.
My ability to function does not prove another person's illness is fictitious. The reverse is also important.
Someone's inability to function does not prove that every explanation offered for that dysfunction is correct.
Science should be able to hold those two ideas at the same time.
There is a difference between saying, “I have hEDS,” and building an identity around having hEDS.
Believe the Patient. Question the Explanation.
Medicine keeps trapping itself between two weak positions. One says these patients are imagining everything. The other says that if suffering is real, every proposed explanation for that suffering must also be real. Neither is science.
A patient can have genuine symptoms and misunderstand their cause. A physician can dismiss genuine disease. Another physician can overdiagnose. A functional-medicine clinician can identify something conventional medicine overlooked. Another can sell an expensive answer to a problem that was never demonstrated to exist.
An online community can rescue someone from profound isolation.
The social contagion may not be POTS. It may not be hEDS. It may not be mold exposure.
What spreads may be the interpretation of symptoms. The vocabulary. The expectation. The diagnostic pursuit. The explanatory model. The identity. Social media did not invent our need to belong.
It did not invent our susceptibility to one another.
It did not invent social contagion.
It did not invent the human bell curve.
It allowed the tails of that curve to find one another, gave them a community, and placed an algorithm between every person searching for an answer and every person willing to provide one.
We should believe people when they tell us they are suffering. We should investigate. We should remain.
And asking difficult questions about illness, identity, commerce, and social influence is not cruelty. It is medicine.
Author: R.E. Hengsterman, MSN, MA, M.E., RN
Registered nurse, night-shift administrator, and author of The Shift Worker’s Paradox
For educational purposes only. Not medical advice.
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This article follows NurseWhoWrites editorial guidelines emphasizing evidence-based practice, transparent sourcing, and real-world clinical experience.
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