Is Ehlers-Danlos Syndrome a Scam?

Ehlers-Danlos Syndrome is Not a Scam

Ehlers-Danlos Syndrome (EDS) is a complex connective tissue disorder that affects numerous bodily functions and can have debilitating effects on a person’s quality of life. Yet, despite significant medical research and advocacy, EDS remains misunderstood and is often dismissed by both the public and healthcare providers. Some question whether EDS is “real” or even label it a “scam,” assuming that patients may be exaggerating symptoms for attention or support. This skepticism, especially as it manifests on social media, fuels a pervasive stigma around EDS and other “invisible illnesses,” impacting the mental, social, and physical well-being of those living with it.

What is Ehlers-Danlos Syndrome?

EDS encompasses a group of genetic connective tissue disorders with a range of symptoms, from hypermobile joints and chronic pain to skin fragility and severe fatigue. The most common subtype, hypermobile EDS (hEDS), lacks a specific genetic marker, complicating diagnosis and treatment. hEDS patients are often diagnosed based on clinical criteria like the Beighton Score for joint flexibility, chronic pain, and fatigue—all subjective measures that can vary significantly between individuals​​.

The ambiguity of hEDS symptoms contributes to a “gray area” in diagnosis, leaving many patients undiagnosed or misdiagnosed for years. Patients often face a long diagnostic journey, enduring repeated visits and years of searching for a correct diagnosis. Adding to this complexity, women—who make up the majority of EDS patients—are disproportionately affected by diagnostic delays and skepticism due to longstanding gender biases in medicine​.

The Role of Social Media: Community or Catalyst for Doubt?

Social media has emerged as both a support network and a double-edged sword for EDS patients. Platforms like TikTok, Instagram, and Reddit provide spaces for individuals to share their stories, connect with others, and raise awareness about EDS. However, this increased visibility has also brought new forms of scrutiny, with communities like the r/illnessfakers subreddit accusing some users of faking or exaggerating their symptoms to gain sympathy or attention. These accusations are often based on assumptions rather than understanding and disproportionately target those with invisible illnesses like EDS that lack clear, visible symptoms​​.

Prominent figures, such as actress Jameela Jamil, have faced public accusations of “faking” EDS symptoms. Jamil has spoken out about the mental and physical toll these accusations take, explaining that they perpetuate a stigma for those already struggling with validation in healthcare settings. For many patients, social media is a space for validation and self-advocacy, but the public doubt generated by “illness faker” communities can force patients to hide their diagnoses, avoid sharing their experiences, or leave supportive communities altogether to avoid harassment​.

The Mental Health Impact of Skepticism and Misdiagnosis

Skepticism surrounding EDS has significant, often devastating impacts on patients. Misdiagnosis, dismissal, and delayed treatment are common, with patients’ symptoms often misinterpreted as psychosomatic or anxiety-driven. For example, Stephanie Aston, a New Zealand woman with EDS, was misdiagnosed with a psychiatric disorder, denied critical care, and ultimately died from untreated symptoms. In another case, Charlotte Hilton Andersen, who suffers from a common EDS comorbidity, POTS (postural orthostatic tachycardia syndrome), was initially told her symptoms were anxiety-related, delaying her diagnosis by years​​.

The medical skepticism toward EDS reflects larger biases within healthcare, particularly when women’s symptoms are dismissed as “hysterical” or psychosomatic. This long-standing prejudice has contributed to high levels of stress and self-doubt for EDS patients, who may internalize the skepticism they encounter. In many cases, the label of “attention-seeking” is attached to patients who appear positive or upbeat online despite their chronic pain, ignoring the coping mechanisms many use to manage their conditions​.

Medical “Kidnapping” and Munchausen Accusations

An especially troubling aspect of this skepticism is the accusation of Munchausen by Proxy, or “medical kidnapping,” where parents seeking medical care for their children are accused of fabricating or inducing symptoms. One such case, featured in the documentary Take Care of Maya, highlights the story of Beata Kowalski, who was accused of Munchausen by Proxy after seeking treatment for her daughter’s complex regional pain syndrome (CRPS). The family was separated due to these accusations, and Beata eventually took her own life, underscoring the severe consequences of mistrust and disbelief in the medical system​.

Gender Bias and the Intersection with Medical Skepticism

The skepticism toward EDS is often rooted in longstanding gender biases in medicine. Research shows that women are far more likely to have their pain dismissed by doctors and often face a disproportionate delay in diagnosis for complex conditions like EDS, endometriosis, and chronic fatigue syndrome. For many women with EDS, this bias not only delays treatment but also leads to self-doubt and mental health struggles. A patient described in National Geographic spoke of the chronic pain and fatigue leading her to question her own symptoms and self-worth due to the dismissive treatment she encountered​​.

Patient-Led Research as a Path Forward

Patient-researchers have been instrumental in advancing EDS understanding and validation within the medical community. Cortney Gensemer, an EDS patient and researcher, has dedicated her career to uncovering the genetic foundations of hEDS in hopes of validating the illness beyond subjective symptoms. By working in laboratories and engaging in peer-reviewed research, Gensemer and other patient-researchers bridge the gap between lived experience and scientific inquiry, offering hope for future diagnostics and treatments for EDS​​.

Advocating for EDS Awareness and Acceptance

As awareness of EDS grows, advocates stress the need for empathy, improved diagnostic protocols, and increased funding for research. Patients and researchers alike argue that the focus should shift from questioning the legitimacy of EDS to understanding its impact and providing effective care. Increased public understanding of EDS as a complex, often invisible condition could help dismantle the stigma and allow those affected to find more reliable support, both within the healthcare system and in society at large.

In a world where the stigma surrounding EDS and other invisible illnesses continues to challenge patients’ legitimacy, it is critical to recognize EDS as a real and complex condition. By validating patients’ experiences and fostering compassion, we can move beyond the misconception of EDS as a “scam” and toward a more inclusive and understanding approach to chronic illness.

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References:

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