Lived Experiences
Author Bio: Dr Rebecca Maguire is an Associate Professor in the Department of Psychology at Maynooth University. Her research interests include health and wellbeing in chronic illness, caregiver burden, health-related expectations, qualify of life and psycho-oncology. In addition, Rebecca has been living with multiple sclerosis for a number of years, which has influenced her research agenda. She is also a board member of MS Ireland.
Tuesday 30th May marks World MS Day – an occasion celebrated by the global MS community with the aim of raising awareness of the condition known as multiple sclerosis (MS). In Ireland, it is estimated that approximately 9,000 people live with MS, however this number could be higher, with one study suggesting that around 300 people are diagnosed in the country every year. Internationally, almost three million people live with the condition, with rates twice as high in women than in men.
Simply put, MS is a chronic, often progressive, neurological condition in which the body’s immune system attacks the central nervous system, resulting in damage to myelin, thereby disrupting signals to and from the brain (see definition from the US National MS Society). Anecdotally, almost all people will have heard of MS, with many having a family member, friend or colleague living with the condition. However, few people will truly understand what MS is, unless, of course, they live with it themselves. To a certain extent I am privileged in this respect, having lived with MS for a number of years now, although my experience has also made me very aware that no two people with MS are the same. The disease can have wide-ranging, fluctuating and variable impacts for those affected, potentially leading to high levels of disability for some, while having minimal effects on the lives of others. Similarly, although some people with MS may require the support of caregivers, many others continue to live independently, holding down demanding jobs, juggling caring responsibilities and whatever else live entails. However, for almost all affected, MS and its management brings additional physical and psychological burdens which can, at times, be difficult to navigate.
Notably, MS can lead to numerous problems for those affected, including issues with mobility, fatigue, cognition, vision, balance, bladder function and pain. Many of these problems can be considered “invisible symptoms” of MS, meaning that they are not perceptible to outside observers, but can have significant impacts for those experiencing them. So, if you know someone with MS, you cannot assume to know what they are experiencing (even if they “look fine”)! Fatigue in particular is a prevalent invisible symptom of MS which, when experienced, can lead to considerable negative impacts on one’s quality of life. As MS is typically diagnosed in early adulthood when people are embarking on their careers, fatigue is one of the key reasons why people with MS leave employment or reduce their working hours. Thankfully, increased options for flexible and remote working can make participation in employment easier for some, although a recent report from MS Ireland suggests that, even for those working, a large proportion feel that MS has limited their career potential suggesting a greater need for support in this respect.
Beyond the physical impacts of living with MS, there is a growing recognition of the psychological impacts that this can have. For example, regardless of functional status, most people living with MS face a lot of uncertainty regarding how their symptoms may impact them on a day-to-day basis, as well as uncertainty regarding the future course of their disease. This, along with limitations imposed by the MS and its treatment, may have psychological consequences, such as an increased likelihood of anxiety and depression relative to the general population. It is perhaps this fact, along with the growing movement valuing public and patient involvement in research, that inspired me to undertake a programme of research in MS myself, with the help of colleagues and collaborators.
Ultimately, our research attempts to understand the factors that can impact psychological wellbeing for people with MS, with a view to determining how this may be enhanced. For example, one of our studies suggests that the expectations people with MS form about the future can have an impact of their quality of life, indicating that fostering positive self-efficacy expectations may be beneficial. More recently, my PhD student Austin Fahy has shown how the experience of anxiety is common in MS, but that this can be mitigated by a range of psychosocial modifiable factors. Encouragingly, this suggests that, while MS can have a negative psychological impact, there are perhaps factors within our control that can help mitigate against this.
Thankfully, a diagnosis of MS today is not what it used to be, and, while there is unfortunately still no cure, there are a range of treatments on offer that may slow progression (albeit, in some cases, with several unwelcome side effects). Aside from international efforts, it is also very encouraging to see the great advances in research in an Irish context. For example, I was recently privileged to become a member of the All Ireland MS Research Network (AIMSRN) executive committee, which comprises researchers of numerous disciplines, with a shared mission to support collaborative research on the island of Ireland that holds the potential to prevent MS, limit its progression, and mitigate potential negative impacts of the disease. This is echoed by the work of MS Ireland, which, in addition to providing a range of services for people with MS, is very supportive in promoting research in this area. For example, we recently held a research event to mark World MS Day, with a focus on ongoing research in the area of neuropsychology, cognition and psychological wellbeing.
The theme for World MS Day this year is “connections”, which emphasises the importance of building relationships and making connections with others, oneself and quality care. We know from our research that social support can be a protective factor for people living with chronic illness such as MS. Unfortunately, though, while many people with MS benefit from a rich network of social support, many others find it difficult to build connections. For example, some may experience stigma and misconceptions associated with the disease which can make it difficult to disclose a diagnosis and reach out for support, while others may lack the resources to engage in supports in the first place. Beyond this, we know that people with MS in Ireland have a number of unmet needs with cannot be fully met by the healthcare system and community services alone. Hopefully, through research, advocacy and policy, things will improve in the future, however there is still some way to go in this respect.
Profile: https://www.maynoothuniversity.ie/people/rebecca-maguire
Email: Rebecca.maguire@mu.ie
Twitter: @rebeccamaguire