Multiple sclerosis (MS) is an autoimmune-mediated neurodegenerative disease that affects approximately 2.8 million people worldwide, and its incidence has risen over the past decade. As health and wellness professionals who have cared for people living with MS, we have both witnessed the ever-evolving journey and the roller coaster of emotions, psychosocial impact, symptoms, and health challenges that people living with MS face. The muscle weakness that makes walking more difficult. The brain fog that makes recall and cognitive functions difficult. The numbness, the tingling, the pain, the muscle spasms, the bladder and bowel dysfunction, the sexual dysfunction, the vision problems, anxiety and depression, and the fatigue. MS symptoms can be addressed with appropriate support, but this is a significant undertaking for those affected and for those close to them.
While medical treatment from neurologists is the first-line treatment recommended to manage MS, we’ve seen the benefits that coaching can bring to MS patients’ lives. Unfortunately, only a small percentage of people living with MS receive coaching. With a shortage of neurologists offering first-line care and ongoing support, this is an urgent issue. More awareness and research on the benefits of coaching for people living with MS is needed to help coaching become part of their standard of care.
Although lifestyle modifications and complementary therapies, such as physical activity, exercise, mindfulness, smoking cessation, vitamin D, and polyunsaturated fatty acid supplementation, are commonly used and regarded as part of best-practice management for individuals living with MS, there is a lack of consensus regarding these practices. Given that health and wellness coaches facilitate behavioral change, it makes sense that coaching would benefit people with MS.
Neurologists, who are at the forefront of treating MS, are in high demand and low supply. According to the U.S. Bureau of Labor Statistics, there is approximately one neurologist for every 100,000 people in this country.
In addition, the nature of multiple sclerosis makes it especially difficult to diagnose and the process of diagnosis itself stressful. Unlike other conditions, like diabetes mellitus, which involves a simple blood glucose test, the diagnostic process for MS involves not only evaluating multiple symptoms separated by time and space but also the exclusion of other diseases. It also involves blood tests and a lumbar puncture to assess cerebrospinal fluid. As a result, MS diagnosis often takes weeks, if not months or years and is often delayed.
Furthermore, not enough research has been done to assess the impact of lifestyle medicine on MS, especially regarding the 6 pillars of lifestyle medicine, which have been researched to be essential to the creation and maintenance of health:
- Nutrition
- Physical activity
- Stress management
- Restorative sleep
- Social connection
- The avoidance of risky substances
Although the exact cause of MS is unknown, lifestyle significantly influences inflammation and immune dysfunction, which has a critical role in the pathogenesis of all types of MS. Lifestyle factors such as physical activity and diet have been shown to significantly influence MS disease activity. According to a recent study published in the Archives of Physical Medicine and Rehabilitation, in which 61 participants received individualized physical activity behavioral coaching for 12 months, 33.9 percent were sufficiently active for substantial health benefits compared with 6.9 percent in the control group (which consisted of 59 participants) at the end of 1 year. In addition, self-management, as described by Wills & Probst (2022), can help by equipping the individual with the skills and ability to manage their symptoms, monitor medication regimens and physical disability, engage in physical activity, maintain nutritional status, and adjust to the psychological demands of their condition.
With its many symptoms and so much information to process, coaching can be an invaluable asset in dealing with the uncertainty and the impact of the condition, and to optimize health and mitigate the disease’s impact through lifestyle behaviors as well as compliance with medical treatment. Coaches also support people in redefining transitions in life, examining self-identity, and transcending the diagnostic label of MS. Nationally board-certified health and wellness coaches also help those living with MS advocate for their own health by assessing their health literacy, and ensuring people understand and are empowered throughout their journeys with the health care system.
In an ideal world, health coaches would work with neurologists and hospitals with all multiple sclerosis patients. Providers must know how to find credentialed coaches, for instance, either through the National Board of Health and Wellness Coaching or the International Coaching Federation – because these coaches adhere to a code of ethics. Patients need to be informed that coaches are available to help them navigate and serve as adjuncts to their care in the short term and in the long term. Nationally board-certified health and wellness coaches are also trained to help people find credible resources to support them on their MS journey.
While physicians diagnose and medically manage multiple sclerosis, coaches help fill in the gaps by working with people to adjust to living with MS in their unique lives, and also by helping people harness their strengths, set unique custom/personal goals, and align their care with their values, and build their support system. Coaches do not provide a one-size-fits-all approach. Instead, they provide customized, one-on-one support for each person on their journey.
Health and wellness coaches help bridge gaps in care and provide support to people living with MS. In addition, coaches also help people with MS build their support team: family, friends, health and wellness professionals – including physical therapists, therapists, nutritionists, and any other alternative therapies that people living with MS may want to utilize. The National Multiple Sclerosis Society also provides many resources.
Providers need to be aware of this so that they can integrate these coaches as part of the health care team in their medical settings – whether private practice or hospital settings. Imagine that a patient could feel supported even after they leave a medical practice or hospital. This is what a coach integrated into a health care provider team can do.
Jessica Singh is a physician wellness consultant. Liz Kiniry is a health and wellness coach and classically trained chef.
