Psychological Impacts of hEDS

The psychological impacts of hypermobile Ehlers-Danlos syndrome (hEDS) are profound, multifactorial, and frequently underestimated. While anxiety and depression are common, the full spectrum of psychological distress also includes trauma-related symptoms, grief, emotional dysregulation, neurodevelopmental challenges, and self-injury. These difficulties stem not only from the physical burdens of the condition but also from the psychological toll of medical invalidation, delayed diagnosis, and fragmented care.

For many, the harm comes not simply from living with a chronic illness, but from repeatedly being disbelieved, misdiagnosed, or dismissed in both medical and social contexts. In addition, conditions such as autism, ADHD, and OCD can interact with hEDS, amplifying distress and complicating daily functioning. This article explores the range of psychological and psychiatric impacts of hEDS, with attention to both biological vulnerabilities and lived experiences.

Prevalence of Psychological Symptoms

Psychiatric symptoms are highly prevalent in both pediatric and adult populations with hEDS, far exceeding rates seen in the general population:

• Anxiety affects up to 80% of individuals with hEDS.

• Depression is reported in up to 53%.

• Post-Traumatic Stress Disorder (PTSD) occurs in 4.7–34.8%.

• Obsessive-Compulsive Disorder (OCD) affects about 2–3% of the general population; while large studies in hEDS are lacking, case reports and clinical experience suggest it may be more common.

• Suicidal ideation (thoughts) or behavior is reported in 7.8–18.6%.

• Disordered eating and self-harm (e.g., restrictive eating patterns, bingeing, purging, or intentional injury without suicidal intent) are also common, though frequently underrecognized.

These symptoms are not merely secondary to pain or disability. They are often compounded by experiences of being disbelieved, pathologized, or told their symptoms are “all in their head.” Children and adolescents may be particularly vulnerable due to developmental factors, peer rejection, parental overprotection, and limited access to trauma-informed care.

Empirically Supported Symptoms

• Anxiety (including generalized worry, physical symptoms like chest tightness or nausea, and panic attacks): Very common in hEDS, often worsened by unpredictable symptoms or fear of injury.

• Depression: May arise from chronic pain, disability, social isolation, or hopelessness about improvement.

• Sleep disturbances: Trouble falling or staying asleep, unrefreshing sleep, or night-time pain and discomfort are frequently reported.

• PTSD and trauma symptoms: Post-Traumatic Stress Disorder (PTSD) can develop after a traumatic experience such as medical trauma, ongoing dismissal by healthcare providers, or frightening physical events like fainting or choking. Symptoms include flashbacks, nightmares, avoidance of reminders, emotional numbness, irritability, and hypervigilance. In hEDS, a form of medical PTSD is increasingly recognized.

• Suicidal ideation or behavior: Thoughts of suicide or self-harm may occur, especially when pain, isolation, or invalidation are severe and prolonged.

• Somatization: The experience of real physical symptoms (e.g., pain, dizziness) that are misinterpreted by others—or oneself—as being purely psychological.

• Disordered eating and self-harm: Includes restrictive eating, bingeing, purging, or intentionally causing physical harm (e.g., cutting) without suicidal intent. These may develop as coping mechanisms for emotional pain or a sense of control.

• Low self-esteem, emotional exhaustion, and hopelessness: Feelings of worthlessness or despair often result from years of being dismissed, misunderstood, or unable to meet social and physical expectations.

• Confusion about bodily sensations and interoception: Interoception refers to the brain’s ability to detect internal signals like hunger, pain, or heart rate. In hEDS, this system is often disrupted, leading to anxiety, uncertainty about what is happening in the body, or difficulty recognizing early warning signs of distress.

• Obsessive-Compulsive Disorder (OCD): Although not well quantified in hEDS, case reports and clinical experience suggest OCD may be more frequent. Symptoms often involve intrusive thoughts and compulsive behaviors, sometimes centered on health fears, injury, or contamination. In hEDS, the unpredictability of physical symptoms and frequent medical dismissal may reinforce obsessive worry and compulsive checking or reassurance-seeking, further increasing distress.

Theoretical or Anecdotally Reported Symptoms

• Kinesiophobia (fear of movement due to concern it will cause pain or injury)

• Emotional shutdown or dysregulation (difficulty controlling or expressing emotions, or emotionally numbing in response to overwhelm)

• Grief and identity loss (mourning one’s previous health or expected future)

• Dissociation (feeling disconnected from one's body, thoughts, or surroundings) and alexithymia (difficulty identifying or describing emotions)

• Neurodivergent-like traits (features such as executive dysfunction, sensory sensitivity, or attention difficulties that resemble conditions like ADHD or autism)

• Fear of the unknown and diagnostic uncertainty (distress caused by lack of clarity about symptoms, prognosis, or diagnosis)

• Social stigma and withdrawal (isolation or avoidance due to shame, misunderstanding, or judgment from others)

Neurodevelopmental and Psychiatric Overlap

The neurological mechanisms and prevalence of ADHD and autism are described in more detail on the Neurological Considerations page.

• Autism Spectrum Disorder (ASD): Autism is more common in people with hEDS than in the general population. While neurological factors such as sensory processing differences are considerable, the psychological impacts are also significant. Sensory sensitivities, social communication challenges, and the stress of navigating a world that is often invalidating can intensify anxiety and depression in those with hEDS. The overlap of autistic traits with chronic pain and fatigue can also make self-advocacy, school participation, and employment especially difficult.

• Attention-Deficit/Hyperactivity Disorder (ADHD): ADHD appears to be more common in people with hEDS than in the general population. Psychologically, ADHD complicates coping by affecting organization, attention, and executive functioning. Fatigue and brain fog from hEDS can resemble or intensify ADHD symptoms, while invalidation from others may reinforce feelings of failure or inadequacy. The combination of ADHD with chronic illness often leads to heightened frustration, self-criticism, and vulnerability to depression.

  
  

Contributing Factors

Biological and Neurological Contributors

• Chronic pain and fatigue are strongly associated with anxiety and depression.

• Autonomic dysfunction (e.g., POTS) contributes to panic-like symptoms.

• Neuroinflammation and altered brain activation impact emotional regulation.

• Abnormal proprioception and interoception contribute to health anxiety.

• Neurodevelopmental overlap (e.g., ADHD, autism) suggests a neuroconnective phenotype.

Psychosocial and Healthcare-Related Contributors

• Bullying and school-based exclusion, especially in youth

• Parental overprotection reducing autonomy and resilience

• Negative healthcare experiences and repeated misdiagnosis

• Fragmented care and specialist hand-offs

• Medical invalidation as a recognized cause of psychiatric harm

These factors not only cause psychological distress but also interfere with treatment adherence, access to care, and self-advocacy, often resulting in long-term emotional harm.

Demographic and Contextual Differences

Professional Interventions

Evidence-Based Therapies

• Cognitive Behavioral Therapy (CBT): A structured, short-term therapy that helps patients change unhelpful thought patterns and behaviors; effective for pain, anxiety, and depression.

• Acceptance and Commitment Therapy (ACT): Focuses on accepting difficult emotions and committing to values-based actions; may help with chronic illness and emotional distress.

• Dialectical Behavior Therapy (DBT): Combines CBT techniques with emotion regulation and mindfulness; used especially for self-harm and emotional dysregulation.

• Mindfulness-Based Interventions: Include practices like meditation and breathing techniques to improve focus, stress resilience, and emotional balance.

• Trauma-Informed Care: An approach that recognizes the impact of trauma and avoids retraumatization; essential for addressing medical PTSD and trust issues in care.

• Psychiatric Medications: Includes antidepressants, anxiolytics, or other medications prescribed to manage symptoms such as depression, anxiety, or PTSD.

Multidisciplinary Clinics

• Offer coordinated care, longer appointments, and integrated psychological support

• Associated with better outcomes across age groups

Self-Management and Peer Support

• Education, pacing, journaling, and participation in peer-led support groups help individuals understand their condition, avoid overexertion, and feel less isolated.

• Assertiveness training and expressive arts (such as writing, music, or visual arts) can provide emotional outlets and improve communication with others.

• Occupational therapy and environmental modification offer strategies to improve daily functioning. Environmental modification includes adjusting one’s physical surroundings—such as using ergonomic furniture, reducing sensory overload, or organizing spaces to minimize strain—to better support comfort, safety, and independence.

• Nature and spiritual connection can enhance resilience by offering grounding, meaning, and restorative experiences.

Emerging Tools

• Digital mental health apps and teletherapy: Mobile or web-based platforms for CBT, mood tracking, mindfulness, and remote counseling.

• Peer-led programs and somatic therapies (e.g., body-based approaches like sensorimotor psychotherapy or somatic experiencing): Focus on the physical experience of emotions and trauma in the body.

• Trauma processing therapies (e.g., EMDR): Trauma therapies help reprocess traumatic memories and reduce emotional intensity.

• Biofeedback and vagal nerve stimulation: Techniques that help regulate the nervous system by increasing awareness and control of physiological responses.

Limitations and Clinical Implications

Despite clear clinical need, psychological care for hEDS remains underdeveloped. Barriers include lack of clinician training, inadequate screening tools, limited research, and systemic disbelief. These barriers contribute directly to psychological harm, reduce treatment adherence, and deepen patients’ distrust in medical systems.

Improving outcomes requires

• Trauma-informed, multidisciplinary care

• Systematic mental health screening

• Provider education to reduce stigma

• Inclusive, high-quality research

• Development of hEDS-specific patient-reported outcome measures (PROMs)

Summary

The psychological burden of hEDS is not simply a reaction to illness; it is shaped by the intersection of biological vulnerability, psychiatric conditions, neurodevelopmental differences, and social adversity. Anxiety, depression, PTSD, OCD, and medical trauma are all common, while autism and ADHD contribute additional challenges with sensory regulation, focus, and executive functioning.

These psychological and psychiatric difficulties are frequently compounded by experiences of invalidation, stigma, and fragmented care. Addressing them requires more than symptom control—it demands trauma-informed, multidisciplinary approaches that acknowledge neurodevelopmental differences, validate lived experiences, and integrate psychological support into overall hEDS management. With proper recognition and support, individuals with hEDS can experience meaningful improvements in emotional well-being, function, and quality of life.