Medical Gaslighting in Chronic Illness

Medical gaslighting, the dismissal or invalidation of a patient’s symptoms or concerns by healthcare providers, is a pervasive problem. Recent studies and personal accounts reveal its profound consequences, particularly for individuals with chronic, rare, or poorly understood conditions. The term extends beyond simple misdiagnosis—it encompasses the psychological manipulation or ignorance that leaves patients doubting their own experiences and reality.

What Is Medical Gaslighting?

Gaslighting, in its broadest sense, is a form of manipulation intended to make someone question their perceptions, memories, or sanity. In healthcare, gaslighting often manifests as providers attributing physical symptoms to psychological factors or denying their existence altogether. For example, phrases like “It’s all in your head” or “Your tests are normal; there’s nothing wrong with you” can leave patients feeling dismissed and unheard.

Who Is Most Affected?

Certain groups are disproportionately impacted by medical gaslighting, including:

1. Women: Women are more likely to have their pain dismissed or attributed to emotional causes. For example, studies show women presenting with heart attack symptoms are more likely to be misdiagnosed or sent home than men.
2. People with Chronic or Rare Illnesses: Patients with conditions like Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Ehlers-Danlos Syndrome (EDS), and Long COVID frequently report being dismissed or treated as if their symptoms are psychosomatic.
3. People of Color: Racial biases in healthcare exacerbate medical gaslighting. Black patients, for instance, are less likely to have their pain adequately managed compared to white patients.
4. Neurodiverse Individuals: Misunderstandings about autism, ADHD, or other neurodivergent conditions can lead to providers dismissing concerns due to differences in communication styles or perceptions.

The Consequences of Medical Gaslighting

The effects of medical gaslighting are profound and wide-reaching:

• Delayed Diagnoses and Mismanagement: Patients with ME/CFS, for example, wait an average of 14 years for a diagnosis. Inadequate or inappropriate treatments can exacerbate symptoms, sometimes irreversibly.
• Psychological Harm: Gaslighting fosters self-doubt, anxiety, depression, and even PTSD. For some, repeated dismissals lead to “clinician-associated trauma,” a concept coined in a 2023 study on EDS patients.
• Erosion of Trust: Negative experiences with providers make patients less likely to seek care, worsening health outcomes.

Medical Gaslighting in Specific Conditions

1. ME/CFS and Long COVID:
   Many patients report being told their symptoms are psychosomatic, often facing recommendations for inappropriate treatments like cognitive-behavioral therapy or exercise. This dismissal is harmful, as it invalidates the biological nature of these conditions and delays effective management.
2. Endometriosis:
   Women with endometriosis often face years of dismissal despite reporting severe pain, leading to delays in diagnosis and treatment.
3. EDS and “Clinician-Associated Trauma”:
   Research shows that repeated negative encounters with healthcare providers—ranging from skepticism to outright dismissal—can cause trauma comparable to PTSD. For example, patients with hypermobile EDS (hEDS) report experiencing psychological distress from being told their pain or joint instability is exaggerated or non-existent.
4. Mental Health Misattribution:
   Patients frequently report that their physical symptoms are misdiagnosed as anxiety or depression, a common issue for women and marginalized groups. This bias leads to inadequate treatment and stigmatization.

How to Combat Medical Gaslighting

1. For Patients:
   • Document Symptoms: Keeping detailed records of symptoms, including patterns and triggers, can help advocate for thorough evaluation.
   • Seek Second Opinions: Don’t hesitate to consult another provider if your concerns are dismissed.
   • Bring an Advocate: A trusted friend or family member can provide support and help ensure your concerns are taken seriously.
2. For Healthcare Providers:
   • Validate Concerns: Actively listen to patients without judgment. Phrases like, “I believe you” can make a significant difference.
   • Educate Yourself: Familiarize yourself with chronic and rare conditions and recognize the limitations of diagnostic tools.
   • Collaborate with Patients: Engage patients as partners in their care, fostering mutual trust and respect.
3. Systemic Changes:
   • Enhance Medical Training: Integrate education about implicit bias, rare diseases, and trauma-informed care into medical school curricula and continuing education programs.
   • Improve Accountability: Establish mechanisms for patients to report dismissive behavior and ensure providers are held accountable.
   • Support Research: Funding for under-researched conditions like ME/CFS, EDS, and Long COVID can reduce gaps in medical knowledge.

Addressing the Root Causes: Education and Awareness

The path forward requires systemic changes in the culture of medicine. Clinicians must be open to saying, “I don’t know,” and seeking out resources or specialists when confronted with unfamiliar conditions. Patients, too, should feel empowered to share their knowledge and experiences without fear of being dismissed.

A Call to Action

Medical gaslighting is not merely an issue of miscommunication—it’s a systemic problem that perpetuates inequality, harms patient outcomes, and erodes trust in healthcare. By fostering empathy, promoting education, and prioritizing patient voices, we can move toward a future where every symptom is taken seriously, and no patient feels unheard.

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References

• Blease, C., Carel, H., & Geraghty, K. (2017). Epistemic injustice in healthcare encounters: Evidence from chronic fatigue syndrome. Journal of Medical Ethics, 43(8), 549–557. https://doi.org/10.1136/medethics-2016-103691
• Fetters, A. (2018). The doctor doesn’t listen to her. But the media is starting to. The Atlantic. Retrieved from https://www.theatlantic.com
• Halverson, C. M. E., Penwell, H. L., & Francomano, C. A. (2023). Clinician-associated traumatization from difficult medical encounters: Results from a qualitative interview study on the Ehlers-Danlos Syndromes. SSM - Qualitative Research in Health, 3, 100158. https://doi.org/10.1016/j.ssmqr.2023.100158
• Maserejian, N. N., et al. (2009). Gender differences in misdiagnosis of heart disease. Journal of Women's Health, 18(12), 2071–2076. https://doi.org/10.1089/jwh.2008.0841
• McManimen, S., McClellan, D., Stoothoff, J., & Gleason, K. (2019). Dismissing chronic illness: A qualitative analysis of negative healthcare experiences. Health Care for Women International, 40(3), 241–258. https://doi.org/10.1080/07399332.2018.1521811
• Moyer, M. W. (2020). Women are calling out ‘medical gaslighting.’ The New York Times. Retrieved from https://www.nytimes.com
• Rubin, R. (2020). As their numbers grow, COVID-19 “long-haulers” stump experts. Journal of the American Medical Association, 324(14), 1381–1383. https://doi.org/10.1001/jama.2020.17709
• Vargas, E. A., & Mahalingham, R. (2021). Experience of patient incivility: A qualitative study. Journal of Patient Experience, 8, 237437352199882. https://doi.org/10.1177/237437352199882
• Williams, M. (2017). The power of propaganda? Journal of Health Psychology, 22(9), 1206–1208. https://doi.org/10.1177/1359105317715476

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