Mental Health in Ehlers-Danlos Syndrome

Introduction

Ehlers-Danlos Syndrome (EDS) is a group of hereditary connective tissue disorders characterized by joint hypermobility, skin hyperextensibility, and tissue fragility. Of its subtypes, hypermobile EDS (hEDS) is both the most common and complex to diagnose, presenting a wide array of physical and psychological challenges. As awareness of EDS grows, researchers and clinicians increasingly recognize the significant mental health burden experienced by patients.

Individuals with EDS frequently navigate a diagnostic odyssey, facing medical skepticism, misattribution of physical symptoms to psychiatric causes, and prolonged suffering from untreated comorbidities such as dysautonomia, chronic pain, mast cell activation syndrome (MCAS), and gastrointestinal dysfunction. These conditions, often misunderstood, lead to significant psychological and emotional consequences, including anxiety, depression, and post-traumatic stress.

The purpose of this article is to explore the complex interplay between EDS and mental health, dissect the mechanisms linking the two, and highlight the clinical and research-based insights necessary to provide holistic care. By addressing prevalent misconceptions and validating patient experiences, this work underscores the need for a multidisciplinary, empathetic approach to EDS care.

Mental Health Conditions like Anxiety, Depression Are Common in EDS

1. Prevalence of Psychiatric Disorders in EDS

Numerous studies indicate a significantly higher prevalence of psychiatric disorders among individuals with hEDS and related hypermobility spectrum disorders (HSD). These disorders include:

• Anxiety Disorders: Generalized anxiety disorder (GAD) and panic disorders are frequently observed.
• Depression: Chronic illness, pain, and invalidation contribute to depressive episodes.
• Neurodevelopmental Disorders: Attention-deficit hyperactivity disorder (ADHD) and autism spectrum disorder (ASD) are more common in EDS populations.
• Mood Disorders: Bipolar disorder and emotional lability are also noted, though less studied.
• Suicidality: The cumulative burden of physical symptoms, untreated pain, and psychological distress increases the risk of suicidal ideation.

Key Statistics:

• Approximately 42.5% of individuals with hEDS present with psychiatric comorbidities, primarily anxiety and depression​.
• Individuals with EDS have a 7.4x higher risk of ASD, 5.6x higher risk of ADHD, and 3.4x higher risk of depression compared to the general population​.
• Sibling studies suggest shared genetic and environmental factors, highlighting familial predispositions.

2. The Psychological Burden of Chronic Pain and Disability

Chronic pain is a hallmark of EDS, affecting muscles, joints, and nerves. When coupled with fatigue and disability, pain contributes to:

• Emotional Distress: Persistent pain exacerbates feelings of helplessness, frustration, and despair.
• Depression: A significant proportion of EDS patients develop depressive symptoms due to the overwhelming impact on quality of life.
• Social Isolation: Reduced mobility, fear of injury, and lack of societal understanding lead to withdrawal from social and professional activities.

Patients often describe pain not only as physically debilitating but also emotionally taxing. A qualitative study revealed that patients face persistent invalidation from clinicians, family members, and society, amplifying their psychological distress​.

3. Anxiety Disorders and Hypervigilance

Anxiety disorders are among the most well-documented psychological conditions in EDS.

• Interoceptive Sensitivity: Individuals with EDS frequently report heightened awareness of internal bodily sensations (e.g., palpitations, dizziness), which can trigger or exacerbate anxiety.
• Dysautonomia as a Trigger: Autonomic dysfunction, particularly postural orthostatic tachycardia syndrome (POTS), often presents with tachycardia, shortness of breath, and lightheadedness, symptoms that mimic panic attacks. This physiological trigger can create a cycle of anticipatory anxiety and emotional hypervigilance​.

Gender disparities are evident, with women disproportionately reporting anxiety symptoms, potentially due to both biological and societal factors​.

Celebrities with hypermobility and EDS have publicly shared their Mental Health Diagnoses

Several high-profile celebrities have spoken candidly about their experiences with mental health conditions and overlapping diagnoses of hypermobility, Ehlers-Danlos Syndrome (EDS), and related conditions like Postural Orthostatic Tachycardia Syndrome (POTS) and Mast Cell Activation Syndrome (MCAS). These public figures highlight the interconnected nature of physical and mental health, especially in conditions characterized by chronic pain, fatigue, and autonomic dysfunction. For example, Grammy-winning artist Billie Eilish has been open about her struggles with Tourette Syndrome, depression, and panic attacks, as well as her hypermobility, which forced her to shift her career focus from dance to music. Similarly, singer Halsey has shared her journey with ADHD, anxiety, and a series of chronic health diagnoses, including EDS, POTS, MCAS, and Sjögren’s syndrome, which took years to be properly identified.

Actress and activist Jameela Jamil has brought attention to the mental health impacts of living with ADHD, PTSD, and EDS, as well as associated conditions like POTS and MCAS. She has spoken out about her experiences with trauma following a suicide attempt, emphasizing the importance of seeking support and destigmatizing conversations about mental health. Likewise, actress and writer Lena Dunham has discussed living with Obsessive-Compulsive Disorder (OCD) and ADHD, alongside EDS-related chronic pain. Their stories underscore the frequent overlap between mental health conditions and hypermobility disorders, as both share common underlying mechanisms, such as dysautonomia, neurodivergence, and the physical toll of chronic illness.

These celebrities’ openness helps shed light on the complexity of invisible illnesses and the mental health challenges that arise from living with chronic conditions. By sharing their struggles, they bring awareness to the need for comprehensive care that addresses both physical and mental health. Their advocacy inspires others to seek proper diagnosis and treatment while challenging the stigma surrounding both chronic illness and mental health.

‍

‍

Mechanisms Linking EDS and Mental Health

1. Autonomic Dysregulation

Autonomic dysfunction, particularly in the form of dysautonomia and POTS, is common in EDS. Dysregulation of the autonomic nervous system amplifies stress responses, leading to:

• Heightened anxiety and panic symptoms.
• Increased sensitivity to emotional and physical stressors.
• Impairment in daily functioning, contributing to emotional dysregulation.

2. Proprioceptive and Interoceptive Deficits

Proprioception refers to the body's ability to perceive its position and movement. In EDS, poor proprioceptive feedback causes:

• Clumsiness and increased risk of falls or injuries.
• Heightened hypervigilance: Patients become more focused on body sensations, particularly when symptoms like joint instability, dizziness, or nausea arise​.

Interoceptive deficits also play a role. Patients report a heightened perception of bodily sensations, which can be mistaken for somatization or anxiety. For example, palpitations caused by POTS may be perceived as a panic attack, reinforcing emotional distress.

3. Chronic Pain and Neuroplasticity

Chronic pain has far-reaching consequences on the brain’s structure and function. Neuroimaging studies suggest that persistent pain alters pathways responsible for emotional processing, leading to:

• Increased risk of depression.
• Impairment in cognitive functions such as attention, memory, and decision-making.
• Greater emotional reactivity, particularly to pain-related stimuli.

4. Neuroconnective Phenotype Hypothesis

Researchers propose a “neuroconnective phenotype” that links joint hypermobility, neurodevelopmental conditions, and psychiatric traits. Shared mechanisms may include:

• Genetic predispositions (e.g., RCCX complex).
• Neurodevelopmental anomalies that influence personality traits, interoception, and mental health conditions (e.g., ADHD, ASD).

This hypothesis underscores the need to view EDS as a multisystemic condition that impacts both physical and psychological health.

Misattributions and Misdiagnosis of Ehlers-Danlos Syndrome

1. The Impact of Psychosomatic Mislabeling

Patients with EDS often face significant challenges in obtaining accurate diagnoses due to the overlap of physical symptoms with psychiatric conditions. Medical gaslighting, where symptoms are dismissed as purely psychological, is a recurring theme in patient narratives.

• Dysautonomia Misattributed to Anxiety: Symptoms like tachycardia, dizziness, and shortness of breath from POTS and autonomic dysfunction are often misdiagnosed as panic or anxiety disorders.
• MCAS and GI Issues Misattributed to Psychosomatic Disorders: Gastrointestinal symptoms like nausea, gastroparesis, and abdominal pain may be incorrectly labeled as eating disorders or somatization without thorough investigation​ of GI diagnoses like gastroparesis.
• Pain Misinterpreted as "Catastrophizing": Patients with EDS report debilitating joint dislocations, headaches, and nerve pain. Contrary to "pain catastrophizing" claims in some studies, evidence suggests that EDS patients often downplay their symptoms to avoid stigma​.

Dr. Pradeep Chopra critiques this issue in an article on Chronic Pain Partners, highlighting how medical literature that overemphasizes psychological explanations can lead to misdiagnosis and harm:

“EDS symptoms are not subjective. Subluxing joints, dysautonomia, and gastrointestinal dysfunction can all be objectively measured. Patients are not exaggerating; they are living through immense pain.”

2. Medical Gaslighting and Clinician-Associated Trauma in EDS

The repeated dismissal of symptoms by healthcare providers creates a form of medical trauma that exacerbates psychological distress.

• A study on clinician-associated trauma revealed that patients with EDS often leave medical encounters feeling invalidated and mistrusted.
• This experience can contribute to post-traumatic stress disorder (PTSD), mistrust in the healthcare system, and delays in diagnosis​.

Key Findings:

• Misdiagnosis increases diagnostic delays, worsening physical symptoms and emotional outcomes.
• Negative medical encounters result in increased patient hypervigilance and reluctance to seek care.

3. Patient Experiences and Resilience

Despite significant physical and emotional burdens, patients with EDS demonstrate remarkable resilience:

• Patients report pushing through pain, fatigue, and emotional stress to maintain employment, relationships, and personal goals.
• Support networks (e.g., online communities and advocacy groups) play a vital role in empowering patients and alleviating feelings of isolation​.

Qualitative evidence indicates that the intersection of medical trauma, societal misunderstanding, and physical symptoms contributes to unique emotional challenges. Patients often describe balancing advocacy with the fear of further invalidation.

4. Response to Published Misrepresentations

Dr. Pradeep Chopra and others criticize studies that:

• Overemphasize psychological causes of EDS symptoms.
• Use non-validated tools to measure hypermobility and anxiety.
• Misinterpret patient hypervigilance and symptom focus as pathological.

This misrepresentation harms patients by reinforcing stigma, delaying appropriate care, and undermining the legitimacy of their physical suffering.

Psychological Support and Interventions for EDS

1. Multidisciplinary and Individualized Care

Effective mental health care in EDS requires a multidisciplinary approach that validates both physical and psychological symptoms.

• Psychologists and Psychiatrists: Address anxiety, depression, PTSD, and emotional dysregulation.
• Chronic Pain Specialists: Integrate pain management strategies into mental health care.
• Physiotherapists: Tailored exercises to improve proprioception and reduce pain, which indirectly alleviates mental health challenges.

2. Psychological Interventions

• Cognitive Behavioral Therapy (CBT):
  • Proven effective for managing chronic pain, anxiety, and depression.
  • Helps patients develop coping mechanisms for physical and emotional challenges.
• Acceptance and Commitment Therapy (ACT):
  • Focuses on acceptance of chronic illness and values-based living.
• Dialectical Behavioral Therapy (DBT):
  • Useful for emotional regulation, particularly when dysautonomia contributes to mood swings.

3. Addressing Stigma and Improving Care

• Clinician Education: Providing healthcare providers with accurate knowledge about EDS to reduce stigma and improve diagnosis rates.
• Patient Validation: Acknowledging the reality of patients' symptoms and avoiding dismissive language like "it's all in your head."
• Trauma-Informed Care: Understanding the psychological impact of repeated medical invalidation and prioritizing trust-building with patients.

4. The Role of Support Networks

• Peer Support Groups: Online and in-person communities provide emotional validation and practical advice for navigating life with EDS.
• Family Education: Helping family members understand the physical and emotional impact of EDS fosters a supportive environment.
• Advocacy Organizations: Groups like The Ehlers-Danlos Society and Chronic Pain Partners play key roles in patient empowerment.

Future Research Directions

1. Clarifying Pathophysiological Links

• Neuroimaging studies to better understand how chronic pain and autonomic dysfunction alter brain activity.
• Genetic studies, such as the RCCX complex hypothesis, to elucidate the link between joint hypermobility, neurodevelopmental traits, and psychiatric symptoms.

2. Improving Intervention Strategies

• Development of EDS-specific psychological guidelines that address the unique needs of this population.
• Creating standardized multidisciplinary care models to integrate mental and physical health management.

3. Longitudinal Studies

• Investigating the genetic, environmental, and psychosocial contributors to psychiatric comorbidities in EDS.
• Assessing the long-term psychological outcomes of patients diagnosed early versus late.

4. Patient-Centered Research

• Prioritizing patient experiences to guide clinical practices.
• Inclusion of qualitative data to explore the emotional impact of living with EDS and medical stigma.

Conclusion

The intersection of Ehlers-Danlos Syndrome and mental health is a complex, bidirectional relationship influenced by physical symptoms, autonomic dysfunction, and medical experiences. While anxiety, depression, and PTSD are prevalent in EDS, these conditions are often exacerbated by medical gaslighting, misdiagnosis, and invalidation.

A patient-centered, multidisciplinary approach is essential to address both the physical and psychological aspects of EDS. By fostering understanding among clinicians, validating patients' experiences, and prioritizing holistic care, we can significantly improve outcomes for individuals with EDS.

References

• Baeza-Velasco, C., Sinibaldi, L., & Castori, M. (2018). Low- and high-anxious hypermobile Ehlers-Danlos syndrome patients: Comparison of psychosocial and health variables. Rheumatology International, 38(5), 871–879. https://doi.org/10.1007/s00296-018-4010-2
• Bulbena, A., Gago, J., Pailhez, G., Bulbena-Cabre, A., Mallorquí-Bagué, N., & Rosado, S. (2017). Psychiatric and psychological aspects in the Ehlers–Danlos syndromes. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 175(1), 237–245. https://doi.org/10.1002/ajmg.c.31547
• Chopra, P. (n.d.). Dr. Pradeep Chopra: Response to the paper on psychological and psychiatric aspects of the Ehlers-Danlos syndromes. Chronic Pain Partners. Retrieved from https://www.chronicpainpartners.com/dr-pradeep-chopra-responseto-the-paper-on-psychologicaland-psychiatric-aspects-of-theehlers-danlos-syndromes/
• Francomano, C. A., Halverson, C. M. E., & Schindler, E. A. (2023). Comorbidity, misdiagnoses, and the diagnostic odyssey in the Ehlers-Danlos syndromes. American Journal of Medical Genetics Part A, 191(2), 236–244. https://doi.org/10.1002/ajmg.a.63135
• Ghibellini, G., Brancati, F., & Castori, M. (2015). Neurodevelopmental attributes of joint hypermobility syndrome/Ehlers–Danlos syndrome, hypermobility type: Update and perspectives. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 169(1), 89–99. https://doi.org/10.1002/ajmg.c.31429
• Harris, D. (2024, October). What mental illness is associated with mast cell activation syndrome? Ehlers Danlos Syndrome (EDS) Clinic. Retrieved from https://www.eds.clinic/articles/what-mental-illness-is-associated-with-mast-cell-activation-syndrome
• Harris, D. (2024, September). Physical health challenges in neurodivergent children. Ehlers Danlos Syndrome (EDS) Clinic. Retrieved from https://www.eds.clinic/articles/physical-health-neurodivergent-children
• Harris, D. (2024, September). Brain fog: What it is and why you shouldn't ignore it. Ehlers Danlos Syndrome (EDS) Clinic. Retrieved from https://www.eds.clinic/articles/brain-fog-what-it-is-and-why-you-shouldnt-ignore-it
• Harris, D. (2024, November). PMS, PMDD, and autism. Ehlers Danlos Syndrome (EDS) Clinic. Retrieved from https://www.eds.clinic/articles/pms-pmdd-autism
• Harris, D. (2024, September). The link between neurodiversity, hypermobility, and EDS. Ehlers Danlos Syndrome (EDS) Clinic. Retrieved from https://www.eds.clinic/articles/link-between-neurodiversity-hypermobility-and-eds
• Harris, D. (2024, October). Neurodivergent celebrities who live with hypermobility, EDS, MCAS, or POTS. Ehlers Danlos Syndrome (EDS) Clinic. Retrieved from https://www.eds.clinic/articles/neurodivergent-celebrities-who-live-with-hypermobility-eds-mcas-or-pots
• Harris, D. (2024, October). PMDD and ADHD. Ehlers Danlos Syndrome (EDS) Clinic. Retrieved from https://www.eds.clinic/articles/pmdd-and-adhd
• Harris, D. (2024, September). What is the link between autism and Ehlers-Danlos syndrome? Ehlers Danlos Syndrome (EDS) Clinic. Retrieved from https://www.eds.clinic/articles/what-is-the-link-between-autism-and-ehlers-danlos-syndrome
• Palomo-Toucedo, I. C., Bautista-Mesa, R., & Llerena, C. (2021). Psychosocial influence of Ehlers-Danlos syndrome in daily life of patients: A qualitative study. Journal of Advanced Nursing, 77(12), 4831–4843. https://doi.org/10.1111/jan.15058
• Sinibaldi, L., & Ursini, T. (2015). Psychopathological manifestations of joint hypermobility syndrome/Ehlers-Danlos syndrome hypermobility type: The role of connective tissue in neurodevelopmental disorders. Clinical and Experimental Rheumatology, 33(2), 137–142.
• Sundelin, H. E. K., Karling, P., Hammarström, M., & Wentz, E. (2022). Psychiatric disorders in individuals with Ehlers–Danlos syndrome: A Norwegian registry-based study. BMJ Open, 12(10), e057477. https://doi.org/10.1136/bmjopen-2021-057477
• Ziadni, M. S., Moayed, F. A., Kamenov, K., & Engel, J. M. (2022). Clinician-associated traumatization from difficult medical encounters: Results from a qualitative interview study on the Ehlers-Danlos syndromes. Chronic Illness, 18(4), 972–983. https://doi.org/10.1177/17423953221109240

‍