
Living with Ehlers-Danlos Syndrome (EDS) or Hypermobility Spectrum Disorder (HSD) can bring a host of unique physical and mental health challenges. One often-overlooked symptom that impacts many people with EDS/HSD is dissociation. Dissociation in the context of EDS/HSD may involve both mental detachment—feeling separate from thoughts and surroundings—and physical dissociation, where someone feels disconnected from their own body. These experiences, although common, can add an invisible layer of difficulty for those managing EDS/HSD.
What is Dissociation?
Dissociation is a mental and physical disconnect that can involve feeling distanced from thoughts, feelings, surroundings, or one’s own body. It exists on a spectrum, with symptoms ranging from mild, such as “zoning out” temporarily, to more severe experiences like feeling physically detached from one’s body or surroundings. Dissociation can be broken down into two main categories relevant to EDS/HSD:
Mental Dissociation: This includes depersonalization (feeling disconnected from oneself) and derealization (feeling that surroundings are unreal).
Physical Dissociation from the Body: Individuals feel disconnected from their physical presence, leading to challenges in body awareness and physical stability.
For people with chronic pain conditions, dissociation may initially serve as a mental and physical coping mechanism. However, when these experiences become regular, they can interfere with a person’s ability to navigate their daily lives and take care of their body effectively.
Why Does Dissociation Occur in People with EDS/HSD?
Chronic Pain and Physical Discomfort
Living with chronic pain is exhausting, and the mind often resorts to coping mechanisms like dissociation to create a temporary “distance” from discomfort. This disconnect may involve feeling less aware of body sensations or experiencing moments of detachment during painful flare-ups. While this may initially offer relief, it can turn into a cycle where physical dissociation becomes the default response to bodily pain.
Unpredictable Physical Symptoms
EDS/HSD is known for causing frequent joint dislocations, chronic fatigue, and unpredictable pain. With these constant fluctuations, it’s common for people to feel disconnected from their own body, as though their physical self is “unreliable” or difficult to control. This dissociation from the body can create long-term issues, making it harder for individuals to assess their physical state accurately or respond quickly to physical needs.
Sensory and Proprioceptive Challenges
EDS/HSD often involves proprioceptive difficulties, where the brain struggles to gauge the position and movement of the body. This lack of bodily awareness can create a sensation of physical detachment, as if the body is foreign or unreliable. This feeling can amplify dissociative episodes, as it’s difficult for people to maintain a steady, grounded sense of where their body exists in space.
Emotional and Medical Trauma
Those with EDS/HSD often experience invalidation and dismissal from medical professionals, leading to feelings of helplessness and trauma. Over time, the buildup of traumatic medical experiences can increase dissociative symptoms, especially when facing new health challenges or appointments. Dissociation, in these cases, becomes a way to mentally “escape” from situations where an individual feels vulnerable or anxious.
Overlap with ADHD, Autism, and PTSD
Dissociation is more common in individuals with conditions like ADHD, autism, or PTSD, which frequently co-occur with EDS/HSD. These conditions may already involve sensory sensitivities and difficulties with body awareness, making physical and mental dissociation a more common experience in people managing multiple diagnoses.
Impact of Dissociation on Daily Life
Dissociation can severely impact the quality of life for individuals with EDS/HSD by interfering with daily functioning, personal relationships, and physical self-awareness.
Physical Health: People with physical dissociation may struggle to accurately perceive pain, joint instability, or other bodily needs. This lack of awareness can delay treatment and lead to accidental injury or further health complications.
Mental Health: Frequent detachment from one’s mind or body can increase feelings of isolation and frustration, particularly when dissociative symptoms are misunderstood or dismissed.
Relationships: Maintaining meaningful relationships can be difficult when dissociative episodes interfere with connection or create barriers in communication. Family members or partners may struggle to understand dissociation, which can create tension or misunderstandings.
Medical Communication: During appointments, dissociation can make it difficult for individuals to accurately communicate symptoms or remember important medical details, which can impact the quality of care.
Strategies for Managing Dissociation in EDS/HSD
Fortunately, there are ways to manage dissociation to improve overall quality of life and reduce its impact on mental and physical health:
Grounding Exercises
Grounding techniques, such as focusing on tactile sensations, performing light stretches, or using sensory objects (like textured stones or ice) can help bring the mind back to the present. These exercises may help reconnect the mind with the body during episodes of dissociation.
Mindfulness and Meditation
Although challenging, mindfulness and meditation can gradually help people reduce the frequency of dissociative episodes. Practices such as body scanning, deep breathing, or guided visualization can improve awareness and reduce the need for mental disengagement during difficult moments.
Proprioceptive and Balance Training
For physical dissociation, exercises that improve proprioception can be especially helpful. Balance exercises, gentle yoga, or even supervised physical therapy can reinforce bodily awareness and improve coordination, helping people feel more connected to their physical selves.
Therapeutic Support
Working with a mental health professional trained in trauma-informed care, particularly one with experience in chronic conditions, can be invaluable. Techniques like Cognitive Behavioral Therapy (CBT) and Eye Movement Desensitization and Reprocessing (EMDR) may help individuals better understand and reduce dissociative symptoms.
Pacing and Self-Care
Managing pain and fatigue through pacing and supportive aids can help reduce the brain’s need to dissociate from physical sensations. A consistent self-care routine that addresses physical needs in small, manageable ways can decrease the likelihood of dissociation and help reinforce a stable sense of physical presence.
Community Support
Joining support groups for people with EDS/HSD and discussing dissociative symptoms can provide validation and reduce feelings of isolation. Online forums or local support groups often allow people to share experiences, coping tips, and resources, fostering a sense of community and mutual understanding.
Moving Forward with Paramotion’s Support
Living with EDS is a journey that requires patience and compassion, and at Paramotion, we’re dedicated to supporting your path toward resilience. We provide tailored movement therapies designed for EDS/HSD, and associated conditions like MCAS and POTS, combining science-backed techniques with gentle care. Our goal is to help you manage symptoms, build body awareness, and improve quality of life—through good times and flare-ups alike.
Explore Paramotion’s programs to find gentle, EDS-friendly movement therapies and join a supportive community that understands your journey. We’re here to help you live with more ease, connection, and confidence. Book your Free 15 mn call here!!
Additional Reading:
Books:
"The Body Keeps the Score" by Bessel van der Kolk: Although not specific to EDS/HSD, this book provides valuable insights into how trauma and dissociation affect the body and mind.
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