Coping with MS – what works?
Three recent studies shed some light on coping strategies people use to meet the challenge of living with MS.
The first study takes a page from positive psychology, an emerging field that looks at the behaviours and practices that enable people to thrive (rather than focussing on fixing problems). To study quality of life in people with MS, the researchers used the Peterson and Seligman model, which outlines 26 character strengths (Smedema SM. Qual Life Res 2020; epublished January 3, 2020). The strengths fall under the categories of Wisdom and Knowledge (creativity, curiosity, open-mindedness, love of learning, perspective, innovation), Courage (bravery, persistence, honesty/integrity, vitality, zest), Humanity (love, kindness, social intelligence), Justice (citizenship, fairness, leadership), Temperance (forgiveness/mercy, humility/modesty, prudence, self-control) and Transcendence (appreciation of beauty and excellence, gratitude, hope, humour, spirituality).
The online survey included 624 people with MS. The survey asked people about their strengths and their quality of life. The character strengths that were most strongly endorsed by people with MS were honesty, kindness and fairness. However, the character strengths that were associated with a higher quality of life were zest, hope and gratitude – suggesting that personal courage and the ability to rise above the fray were most important for improving a person’s day-to-day life.
Coping strategies are about managing emotions – coming to terms with the perception (which may not be accurate) that what you want out of life is being threatened or taken away. So the second study took a more practical look at which methods of coping work for people with MS (Grech and colleagues. Int J MS Care 2019;21:201-206). The researchers found that coping strategies change and evolve over time. Early on in MS, some degree of denial can help to cushion the blow of the diagnosis and what it may mean. But denial doesn’t provide a solution to a problem – it doesn’t acknowledge that there is a problem – so it’s necessarily a short-term strategy. Later on, more active strategies are needed (e.g. planning and problem-solving) that enable the person to feel some control over the situation. If problems develop for which there is no active solution (such as disability), the best approaches are acceptance of the situation, personal growth (exploring new opportunities, abilities and people), and developing some perspective (reinterpreting things in a different light, or exploring your spiritual or religious side). It’s important to emphasize that acceptance of the situation is not the same as acceptance of responsibility (i.e. self blame). MS isn’t caused by lifestyle or other choices and blaming yourself for developing MS doesn’t help anyone.
Coping well can be a matter of maintaining a balance between reality and hope. You need to hope for the best while avoiding the disappointment that will come with having unrealistic expectations. The long-term outcome for a given person with MS is difficult to predict – many scenarios are possible. This raises an important issue when talking to a doctor: do you want to know what may happen during your course of MS? This issue was examined in a survey of 300 people with MS in Argentina (Canero Contentti and colleagues. Mult Scler Relat Disord 2019;37:101445). Over 70% of people said they wanted to know what might happen with their MS, either when they are first diagnosed or at some later date. About 60% said they wanted to learn more about the progressive phase of MS. The people who were less likely to want information about long-term outcomes were those who generally felt well, those who had more denial about their MS, and people who blamed themselves for having MS. The disconnect in the survey, however, was that while most people wanted to hear about the long-term prognosis, a majority of doctors hadn’t discussed the topic in any great detail. This suggests that doctors may be afraid of discouraging people, even though this may help to foster denial. It also suggests that people with MS may need to initiate that conversation if that information will help them cope better with their MS.
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