Multiple sclerosis (MS) can cause unpredictable physical and mental changes. For many people with MS, these changes may come and go. Middle age can be an especially tough time to manage the changes associated with MS. Yet past research has found that people with MS can cope well with these changes by being “resilient”—that is, by being able to bounce back and keep going after a stressful experience. In the current research, we asked people with MS to tell us what they did to stay resilient and what things got in the way of being resilient. To get multiple points of view on this topic, we also asked questions about resilience to a group of people whose partners had MS and a group of professionals who have a stake in the MS community, such as nurses at an MS clinic and staff at the MS Society.
We held four focus groups: one with six middle-aged men who have MS, one with six middle-aged women who have MS, one with eleven people whose partners have MS, and one with nine professionals. We asked each focus group to tell us in their own words what it means to be “resilient”, what things they do to bounce back from challenges or stress, and what things get in the way of being resilient. We transcribed the focus group discussions and read the transcripts carefully to identify the most commonly mentioned themes.
The focus group participants mentioned five major strategies for staying resilience while coping with MS:
The participants also told us about five barriers that can get in the way of being resilient.
Feeling burned out by having to adjust to multiple life changes.
Negative thoughts and feelings such as sadness, anger or denial.
The stigma of having a physical disability, which motivated some participants not to use assistive devices in public.
Social limitations, such as friends not understanding MS, or problems socializing due to lack of transportation.
Physical and mental fatigue.
There are several ways we can bounce back and keep going while experiencing changes related to MS, such as:
For more information, check out our recent paper on How Resilience May Help us Stay Engaged in Life.
Arielle Silverman, PhD is a post-doctoral fellow with the Healthy Aging RRTC who is interested in physical disability, resilience and stigma.