The Benefits of Psychological Treatment for Ehlers-Danlos Syndrome (EDS)
Patients often wonder why they should consider seeing a psychologist after being diagnosed with Ehlers-Danlos Syndrome or Hypermobility Spectrum Disorder. Aren't these symptoms happening in their body and not their mind? This is especially difficult for some patients who have been told that their symptoms are all in their head.
We now know that the experience of physical symptoms, such as pain, fatigue, or gastrointestinal symptoms are generated in the brain and it depends on a person’s unique circumstances. Just because patients might be asked to consider seeing a psychologist does not mean we think their symptoms are "all in their head” or that they are imagining it or making it up. These symptoms are a signal of damage or danger. They tell us something is wrong in the body. Although the signal is sent from the body, it’s the brain that processes the signal.
The brain also integrates these signals from the body with other aspects of the person’s experience, such as their past history of danger or threat related to their health, their expectations about their symptoms or illness, their worries and anxieties, and their interpretation of what EDS or hypermobility mean in their daily lives. All of these psychological factors can amplify sensory signals that are coming from the body so that we feel them more intensely.
A trained health psychologist can help patients to examine their expectations, thoughts, and feelings related to their physical health and guide them in learning coping strategies. These aspects of EDS are ones that patients can learn to actively manage in order to gain a better understanding and a greater sense of control over their symptoms.
How Can a Psychologist Help with EDS or hypermobility?
The effects of collagen dysfunction or joint instability do not alone determine whether we feel pain or other symptoms and how strong or intense those symptoms are. The symptoms we feel are caused by illness plus our thoughts and feelings about the pain. Even in EDS, symptoms are determined by more than just injury or illness.
For example, the overall experience of pain comes not only from the bodily sensation of pain (e.g., its duration, frequency, and intensity) but also the interpretation of these sensations (e.g., its meaning) based on a person’s unique past and present life experiences.
Addressing the psychological aspects of an illness can change how it is experienced.
The good news is that patients can take an active role in dealing with their physical symptoms. Patients need not feel helpless in waiting for their condition to improve. Psychologists have techniques and tools they can teach patients to use to help them reduce the concern and worry as well as the symptoms themselves.
Having EDS can significantly affect a patient’s quality of life in general due to worries about their illness, the distressing nature of their symptoms, and doubts about their future health. A positive and proactive outlook on life with EDS can have a positive impact on the healing process and the experience of illness.
A trained health psychologist can help patients with EDS and hypermobility to take control over their symptoms, to learn to move these symptoms into the background, and to improve their present and future quality of life. So if you’re asked whether you want to see a psychologist for help coping with EDS, why not consider it?
We now understand that the experience of illness is influenced by various biological, psychological, behavioural, and social factors. Researchers and healthcare practitioners refer to this as the Biopsychosocial Model of Health.
In the treatment of chronic illness it is beneficial to focus on the different components of the symptom experience using a holistic, integrated approach. The GoodHope EDS clinic team includes expert psychologists who treat patients by addressing the unique circumstances of their health experience in the broader context of their lives.
The Biopsychosocial Model
Therapies used by our Psychologists
Psychologists at the EDS clinic practice therapeutic interventions that are tailored to individuals with EDS and hypermobility and address education, coping, quality of life, and mood and anxiety concerns.
The therapeutic interventions are based on research evidence showing effectiveness in adjustment to illness and symptom management, including studies conducted at the Toronto General Hospital. Learn more about the different types of therapies below:
Acceptance & Commitment Therapy (ACT)
ACT is an effective behavioural intervention for chronic illness that is strongly supported by research. ACT helps to reduce health-related distress and improve functioning in people living with illness. Moreover, this treatment is effective for management of specific symptoms of EDS, such as pain.
The goal of the intervention is to help patients develop skills to make illness more manageable through committed engagement in valued life activities and mindful acceptance of the difficulties of experiencing symptoms.
Dialectical Behaviour Therapy (DBT)
DBT is a type of cognitive-behavioural therapy that helps patients manage difficult feelings. It emphasizes learning new skills to increase tolerance for distress, acceptance of circumstances, and non-judgmental awareness of the present moment.
Through DBT, patients learn to identify and express feelings, and to analyze their reactions to their feelings. These skills can help chronic pain patients reduce avoidance of experiences that may provoke pain and thus lessen pain-related disability.
Mindfulness
Mindfulness is a practice of paying attention to the present moment with curiosity, openness, and acceptance. Mindfulness-based therapies help patients to learn to observe their inner sensations and the surrounding environment without judgment so they can step back and reframe their experience of chronic pain.
Mindfulness-based interventions have strong research support and can help patients gain a sense of control of their pain, lower anxiety and depression, and improve their quality of life.
Clinical Hypnosis
Hypnosis is a mental state involving heightened attention and reduced external awareness, alongside relaxation and greater openness to suggestions. Hypnosis used in therapy can be an effective approach to chronic pain and gastrointestinal symptom management for some patients, helping to reduce symptom intensity and improving their quality of life.
A therapist guides a patient towards a calm and relaxed state of hypnosis with the help of verbal repetition and mental imagery. The therapist then offers suggestions to help the patient cope with undesired experiences and behaviours. Patients can also learn self-hypnosis skills to use as a coping strategy for symptom management.