30 May 2022

30 May is World Multiple Sclerosis (MS) Day. Today, MS affects more than 2.8 million people around the world. While there is no cure, many of the symptoms can be managed and treated and Mindfulness has been found to be helpful for some in managing the physical as well as mental symptoms of the progressive and unpredictable disease.

Helen Rees Leahy shares with us her story of how mindfulness helped her to lead her life and manage the disease with more self-compassion and self-care.

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Multiple Sclerosis (MS) is a chronic condition which, as yet, has neither a clear cause nor a cure. It is experienced very differently by each of us who lives with MS. Some people maintain a high level of physical and cognitive function for many years after diagnosis, while others experience diverse symptoms, including impaired balance and mobility, spasticity, pain and profound fatigue. One thing is certain: the course of MS is unpredictable, and its effects can vary from day to day.

It is no surprise that there is a clear link between stress and MS. While the evidence that stress can cause of MS is not conclusive, such a diagnosis is bound to trigger feelings of insecurity and anxiety. In turn, stress exacerbates MS symptoms…and a circle of suffering is formed.

When I was diagnosed with Primary Progressive MS in 1997, my immediate response was to carry on as ‘normal’ for as long as possible. I bottled up my response to the diagnosis and became an expert in hiding my vulnerability from others. At work, I performed expertly in front of colleagues and students; afterwards, I locked my office door and sank into my chair with exhaustion. With family and friends, I put on a cheerful face and acted the life and soul of the party. Then I would take days to recover.

As my MS symptoms advanced, this performance of normality became increasingly impractical and self-deceiving. Something had to change, but where could I find the tools I needed, both to accept myself and be more honest with other people? By great good fortune, in 2014, my curiosity about the Mind / Body continuum prompted me to sign up for the Breathworks 8-week Mindfulness for Stress course. For the first time since my diagnosis, my focus shifted towards self-compassion and self-care. Not only did I learn how to meditate, I learned how to lead my life.

The course equipped with a tool kit that enabled me to accept and value my life, including my illness, moment by moment. Of course, learning to live well with MS is a continuing process of falling down and picking myself up - sometimes, literally. But nowadays, when anxiety, fatigue or self-criticism threatens to overwhelm me, I know that I have the capacity to calm and rebalance myself.

My teacher on the 8-week course was Gary Hennessy, one of the founders of Breathworks. All these years later, I still use the guided meditations that Gary recorded for the course. Hearing his voice again, reconnects me to the process and pleasure of learning from a wise and compassionate teacher, and takes me back to my beginner’s mind. Since then, I have developed a regular habit of attending mindfulness retreats and courses: I need to nourish my practice and myself with the support of others, especially teachers such as Vidyamala whose wisdom is infused with her own experience of living with pain.

Has mindfulness cured my MS? Of course not. But it has shifted my focus from denial to acceptance, and from frustration to self-compassion. I have deliberately slowed the pace of my life and, as a result, I feel freer and more open to experience than ever before.

Research Evidence for Mindfulness and MS Mindfulness has proved to be a great help in managing several of MS symptoms such as regulating emotions, improving attention and memory, as well as reducing tiredness. A 2021 review1 found that mindfulness and acceptance-based interventions like ACT significantly improved quality of life for those with MS; improving symptom management, emotional balance, and cognitive symptoms like attention and memory. Mindfulness may support cognitive function by increasing attentional capacity and reducing distractibility. This is a significant finding for the 40-65% of those with MS who suffer from cognitive symptoms2. Tai Chi, a traditional martial art which focuses on slow and conscious movements (sometimes described as meditation in motion) has been shown to be of benefit to those with MS as it trains coordination and balance3. One aspect of Breathworks mindfulness courses is the inclusion of ‘mindful movement’ practices which are not dissimilar to Tai Chi.  References 1. Han, A. (2021). Effects of mindfulness-and acceptance-based interventions on quality of life, coping, cognition, and mindfulness of people with multiple sclerosis: a systematic review and meta-analysis. Psychology, Health & Medicine,27(2), 1-18 2. Amato, M. P., Zipoli, V. & Portaccio, E. (2006). Multiple sclerosis-related cognitive changes: A review of cross-sectional and longitudinal studies. Journal of the Neurological Sciences, 245(1-2), 41-46.  3. Burschka, J. M., Keune, P. M. et al. (2014). Mindfulness-based interventions in multiple sclerosis: beneficial effects of Tai Chi on balance, coordination, fatigue and depression. BMC Neurology, 14, 165