Last week, The Telegraph published a piece by Poppy Coburn arguing that a generation of young women have turned chronic illness into a social identity, a lifestyle trend, an aesthetic. She coined, or at least popularised, the term “sickfluencer.” I read it multiple times. I am a neuroscientist and researcher who spends her evenings reading autonomic medicine papers so that the people who actually have these conditions can access the science that is supposed to be helping them. But not only this, my parter has PoTS and spent years fighting for a diagnosis and makes content to increase awareness, a fellow ‘sickfluencer’ if you will. Anyway, I have thoughts.
Coburn does not get much right. The one exception that I will give her is this: there are a fair few undisclosed advertisements in chronic illness communities. There are people selling unproven supplements to vulnerable patients. There are individuals presenting themselves as medical professionals without the qualifications to do so. These are real problems and the PoTS community itself is frequently vocal about them. That part of her argument is legitimate.
Everything else is not.
Link to this monstrosity - https://www.telegraph.co.uk/news/2026/09/05/disability-became-cool/
The word that started this
Hysteria. From the Greek hystera, meaning uterus. For most of recorded medical history, unexplained symptoms in women were attributed to a wandering womb, a restless uterus drifting around the body causing chaos. The treatment, depending on the era, was marriage, pregnancy, or surgical removal. The underlying assumption remained consistent across two millennia: when a woman’s body produced symptoms that medicine could not easily explain, the problem was the woman, not the medicine.
The Telegraph did not use the word hysteria. It did not need to. The argument was structurally identical. Young women are performing illness. Their symptoms are hard to prove. Their online communities are making disability fashionable. The country is being deceived by women who have, in Coburn’s framing, adopted chronic illness as a social identity akin to sexuality or race.
She quotes Dr Lesley Kavi, chair of PoTS UK, who says that half of PoTS patients are told their symptoms are in their head. She includes this as a passing acknowledgement before returning to her central argument that these same women and their online communities are the problem. Those two things cannot coexist. You cannot in the same breath acknowledge that half of patients are wrongly dismissed by doctors and then suggest that their communities and their advocacy are a performance. Pick a lane.
The explosion of PoTS is not a mystery
The "explosion" of PoTS diagnoses that Coburn treats as evidence of social contagion has a documented, measurable, peer-reviewed explanation. Long COVID is the most significant driver of the recent rise, but it is not the only one. Better clinical awareness, faster diagnosis, and a growing body of research have meant that a condition which has always existed is simply being identified more reliably than before.
COVID-19 triggers post-viral dysautonomia. This was documented after SARS-CoV-1 in 2002, after glandular fever, after influenza. The pandemic produced tens of millions of new post-viral illness cases globally and the autonomic nervous system was among the most frequently affected systems. A 2025 Swedish study of highly symptomatic Long COVID patients found that 31% met diagnostic criteria for PoTS at twelve month assessment. A 2026 meta-analysis pooling 21 studies and over 21,000 patients found a pooled prevalence of orthostatic intolerance of 70.6% in Long COVID patients.
These are not women discovering a new aesthetic on Instagram. These are people who had a viral infection and developed a measurable autonomic condition as a consequence, or who had a condition that went undiagnosed for years and finally has a name. The numbers are large because the pandemic was large and because the diagnostic infrastructure has finally started to catch up. That is the explanation.
The 30 beats per minute she calls arbitrary
Coburn describes the diagnostic criterion for PoTS, a sustained heart rate rise of 30 beats per minute on standing, as an “arbitrary medical benchmark.” It is not arbitrary. It is the result of decades of cardiovascular research by some of the most rigorous autonomic specialists in the world at Vanderbilt University, the Mayo Clinic, the University of Calgary. The threshold was established through careful study of the relationship between orthostatic heart rate changes, symptom burden, autonomic function, and quality of life. It has been validated across multiple large cohorts and refined over time as the evidence base has grown.
Calling it arbitrary is not a neutral observation. It is a dismissal of the scientific work that gave this condition its name, dressed up as scepticism.
What those Instagram communities are actually doing
Here is what Coburn observed: women share infographics about symptoms. They describe their diagnostic journeys. They post about their experiences with doctors. They tell each other that doctors were wrong about endometriosis and might be wrong about PoTS.
Here is what she concluded: sickfluencer culture. Aesthetic performance. A social identity.
Here is what the research says. Online chronic illness communities provide access to diagnostic information, peer support, and clinical language that patients then use in medical appointments to advocate for themselves. They help people identify symptoms they did not know had names. They give them the vocabulary to describe their experience in ways a clinician will recognise. They reduce the time between symptom onset and diagnosis.
For a condition where the average diagnostic delay is 7 years, and where 77% of patients are told their symptoms are anxiety before receiving a correct diagnosis, this function is not trivial. It is not aesthetic. It is the difference between being believed and not being believed.
One of the women Coburn quotes describes developing health anxiety and OCD as a result of poor experiences with doctors. Coburn includes this as evidence of a sick culture. It is actually evidence of what happens when women are systematically dismissed by the medical establishment for years on end. The psychological consequences of medical gaslighting are documented, real, and the appropriate response is to fix the gaslighting. Not to pathologise the communities that form in its aftermath.
What the science says about these conditions
Since Coburn did not engage with it, I will.
In PoTS: 61% of patients show abnormal cerebral blood flow on brain SPECT imaging, including while lying flat, in the regions of the brain responsible for attention, decision-making and memory. Quality of life scores are comparable to congestive heart failure. The average patient is 32 years old. (Seeley et al., Scientific Reports, 2025)
In ME/CFS: a protein called WASF3 physically dismantles the mitochondrial machinery in skeletal muscle cells, preventing the assembly of the structures that produce cellular energy. Published in the Proceedings of the National Academy of Sciences. (Wang et al., PNAS, 2023)
In Long COVID: muscle biopsies taken one day after exercise triggered a crash showed cellular damage, immune infiltration, and mitochondrial decline visible under a microscope. Blood supply to the muscle was identical in patients and controls, ruling out deconditioning entirely. Published in Nature Communications. (Appelman et al., 2024)
In EDS: a specific genetic variant in a gene called KLK15, found across multiple unrelated families with hypermobile EDS, physically alters connective tissue in a mouse model carrying the equivalent mutation. Published in iScience. (Gensemer et al., 2025)
None of these findings are consistent with social contagion. All of them are inconsistent with the suggestion that these women are performing illness for an online audience. These are cellular events. They are visible under microscopes and on brain scans. They do not care about Instagram aesthetics.
The data Coburn did not mention
A study published in the Journal of General Internal Medicine in August 2026, one week before her article, gave 1,027 primary care physicians identical PoTS cases with only the patient’s demographics changed. Male physicians correctly diagnosed PoTS in 41.7% of cases. Female physicians managed 51.8%. PoTS had the lowest diagnostic accuracy of all five conditions tested, lower than lupus, lower than multiple sclerosis, lower than syphilis. For Black female patients specifically, male physicians reached the correct diagnosis in only 36.1% of cases.
This is the system Coburn implicitly trusts over the patients and communities she labels sickfluencers. A system in which a male doctor, presented with an identical clinical case, fails to correctly diagnose a predominantly female condition 58% of the time.
The women turning to online communities are not abandoning evidence-based medicine. They are navigating around a system that, by its own published data, is systematically and measurably failing them. The infographics are not the problem. The infographics exist because the appointments are not working.
How far we have come. How far we still need to go.
Women now make up more than half of medical school entrants in the UK. Clinical trials in the United States can no longer legally exclude women, a right that only existed from 1993. The Yentl Syndrome, named for the documented phenomenon of women receiving inferior cardiac care to men with identical presentations, is now a recognised term in cardiology literature. These are genuine advances worth acknowledging.
A 2025 narrative review in Cureus synthesising evidence across multiple specialities found that gender bias continues to influence diagnostic pathways for young women, contributing to delayed recognition of serious neurological, cardiovascular, autoimmune, and pain-related conditions. A 2024 State of Healthcare Report found that 66.1% of women reported receiving a misdiagnosis in the past two years, compared to significantly fewer men. The National Academies of Sciences, Engineering and Medicine published a landmark report in 2024 calling for significantly enhanced NIH research into chronic conditions that predominantly affect women, citing a lack of data that is directly hindering diagnosis, treatment and prevention.
Women with chronic illness are not choosing economic inactivity. They are navigating a healthcare system that takes an average of 7 years to diagnose them, an employment system not designed for variable capacity, and a media environment that responds to their advocacy with the word sickfluencer.
The last line
The word is sickfluencer. The logic is two thousand years old. The harm is documented, measurable, and ongoing.
Illness is not an aesthetic. It is a cellular event. And the science has the receipts.
The views and opinions expressed in Dysautonomia Decoded are my own and do not represent those of my employer or any affiliated organisation.
References
Harrilal-Maharaj K. Gender bias and diagnostic delays in young women: a narrative review. Cureus. 2025;17(12):e100004. https://doi.org/10.7759/cureus.100004
Soliant Health. 2024 State of Healthcare Report. https://www.soliant.com/resources/state-of-healthcare-report/
National Academies of Sciences, Engineering and Medicine. Improving research on chronic conditions in women. 2024. https://www.nationalacademies.org/news/2024/07/significant-lack-of-data-and-research-on-chronic-conditions-affecting-women
Sediqi S, et al. Assessing the role of patient-physician sex concordance on diagnostic accuracy in primary care. Journal of General Internal Medicine. 2026. https://doi.org/10.1007/s11606-026-10670-6
Wang C, et al. The prevalence of orthostatic intolerance in post-acute sequelae of COVID-19. Frontiers in Cardiovascular Medicine. 2026;12:1679252.
Appelman B, et al. Muscle abnormalities worsen after post-exertional malaise in long COVID. Nature Communications. 2024;15:17. https://doi.org/10.1038/s41467-023-44432-3
Seeley MC, et al. Novel brain SPECT imaging unravels abnormal cerebral perfusion in POTS. Scientific Reports. 2025;15:3487. https://doi.org/10.1038/s41598-025-87748-4
Wang PY, et al. WASF3 disrupts mitochondrial respiration and may mediate exercise intolerance in ME/CFS. PNAS. 2023;120(34):e2302738120. https://doi.org/10.1073/pnas.2302738120
Gensemer C, et al. KLK15 alters connective tissues in hypermobile Ehlers-Danlos syndrome. iScience. 2025;28(9):113343. https://doi.org/10.1016/j.isci.2025.113343
Shaw BH, et al. The face of postural tachycardia syndrome. Journal of Internal Medicine. 2019;286(4):438–448.
“women turning to online communities are not abandoning evidence-based medicine. They are navigating around a system that, by its own published data, is systematically and measurably failing them.”
Thank you for writing this.
It has been great confirmation for me🙏🩵
thank you for writing this. this term & such speculation has angered me greatly. I was finally helpfully diagnosed at 53 after nearly a lifetime of illness & ages of attempting to get help. the gaslighting & the disrespect is seemingly endless. i wish i could give such judgmental souls one days walk in our bodies