Rehabilitation psychologist Dr Roy Aloni discusses MS-related distress and explains how an app can support MS patients experiencing this.
Multiple sclerosis (MS) is a condition that can affect the brain and spinal cord, causing a wide range of potential symptoms, including problems with vision, arm or leg movement, sensation, and balance. Usually diagnosed in people in their 20s and 30s, MS is a lifelong condition that can sometimes lead to serious disability.
As well as the physical symptoms of MS, the condition is also often associated with mental stress caused by the symptoms and the unpredictability of the disease’s nature. These stressors can lead to mental distress that, in turn, can become traumatic distress manifested as a variety of symptoms including intrusion, avoidance, hyper-arousal, and negative changes in cognition, and expressing emotions.
The nature of MS’ symptoms and dealing with the traumatic distress they cause can also affect other areas of a person’s life. For example, the cluster of avoidance symptoms it causes include internal and external avoidance. Internal avoidance describes attempts to avoid thinking about the disease, while external avoidance refers to avoiding various triggers related to the disease. This might include avoiding the hospital, examinations, and medications, and it may even spread to include other daily and life functions that relate directly or indirectly to the disease.
Living with MS-related PTSD
Today’s research and clinical literature recognises short-term targeted therapies to treat PTSD caused by MS. These treatments can help reduce traumatic distress, emphasising controlled exposure to traumatic content while reducing avoidance. There is great importance in assessing traumatic distress, especially in the early stages after diagnosis and significant relapses.
It is vital to understand and remember that the emotional aspects of dealing with MS can significantly impact disease management. It can affect the responsiveness to medical and paramedical treatments.
The BelongMS app is a free and anonymous AI-powered social networking and navigation platform for multiple sclerosis patients, caregivers, and healthcare professionals. BelongMS utilises proprietary machine learning algorithms and domain expertise to provide hyper-personalised information to support patients throughout the MS journey, while uncovering new insights into patient experiences. This includes support groups and direct access to medical professionals, including neurologists, radiologists, urologists, and others who can answer patient questions. The app also provides useful tools, including a medical binder manager to store and organise medical records in one place, with the option to share them securely and privately with family members or physicians. A clinical matching trial feature is also available, using Natural Language Processing (NLP) algorithms to analyse all available trials around the globe to match patients within two weeks, on average.
The app can be downloaded for Android and iOS.
The significant issues predominantly discussed in the group are mainly adaptation to the various aspects of the disease, which manifest in emotional distress such as depression and anxiety, and keeping the disease a secret.
The BelongMS app is developed by Belong.Life. The company develops social and professional networks for managing and navigating various diseases and patient journeys. Alongside Belong MS, its portfolio also includes Belong-Beating Cancer Together, BelongIBD, CoronApp, and more. Belong.Life’s mission is to improve the quality of life and quality of care around the world through technology, engagement, data and AI for patient communities, healthcare organizations, pharma and hospitals. The company’s solutions encourage the formation of patient communities, and provide care coordination, customised content, and advanced management features for users.