Resilience is an essential quality that helps people to recover from setbacks. While resilience is a complex concept that can be difficult to precisely define, it’s generally understood as the ability to recover and adapt in the face of adversity. Demonstrating resilience doesn’t mean that you won’t experience difficulty or distress, but rather that you will be able to keep moving forward in spite of those feelings.
However, life sometimes throws you challenges that are particularly difficult to bounce back from, such as an MS diagnosis. An incurable autoimmune disease that affects the central nervous system, MS is extremely unpredictable and can involve varying levels of physical, cognitive, and emotional disability. In addition, with relapsing-remitting MS—by far the most common of the four types of MS—symptoms can come and go seemingly at random. Faced with such unpredictability, it’s therefore hardly surprising that many people living with MS develop depression or anxiety and can find it difficult to maintain a sense of resilience.
In addition to the challenges of dealing with the symptoms, there are other factors at work that may make it particularly hard for people with MS to be resilient. A 2017 focus group study conducted by researchers at the University of Washington School of Medicine identified a number of additional barriers to resilience for people with MS. These barriers include:
Social limitations—Many study participants talked about how they felt more limited socially as a result of MS. For example, some participants described the physical challenges of attending social events while in a wheelchair, which often led to fewer social interactions and a feeling of being left out, while other participants mentioned that they had lost or drifted away from friends who didn’t understand MS.
Negative thoughts and feelings—A low sense of self-worth, feelings of depression and mood swings, and an ongoing focus on things they couldn’t do any longer were some of the negative thoughts and feelings reported by study participants. Not everyone realizes that MS has a profound, lifelong emotional component that is a complicating factor in dealing with the disease. Information released by the American Academy of Neurology in 2014 suggests that more than half of people with MS will experience depression at some point in their lives. These emotional challenges are further exacerbated by chronic fatigue—often extreme to the point of limiting everyday functioning—that affects almost all patients with MS.
The stigma of MS—Despite significant awareness-building campaigns by organizations such as the National MS Society, MS is still a condition that is often misunderstood and carries a certain stigma. Some study participants felt this so strongly that they reportedly hid their diagnosis from others. Celebrities, such as Selma Blair are also helping by lending their influence to bring additional awareness to this often misunderstood disease.
How people with MS can build resilience.
In spite of the aforementioned barriers, resilience is not simply a trait that people either have or don’t have. Rather, it’s a skill (involving behaviors, thoughts, and actions) that anyone can learn, practice, and build over time. What this means for people with MS is that “resilience training” can have a significant impact on their ability to adjust to and cope with the reality of their disease.
Recent research further supports this idea. Kevin Alschuler (a co-author of the University of Washington study) and his colleagues examined the impact that a National MS Society’s positive psychology course, which included a resilience component, had on people with MS. The researchers found that patients with MS who participated in the positive psychology curriculum improved their sense of resilience by about 20%. By comparison, there was no impact on the resilience of people who did not take part in the program.
The research highlights one of the most important steps that people with MS can take to help build their resilience: namely, to treat it as a skill that people need to develop and, even more importantly, to seek help in developing it through classes like the National MS Society’s positive psychology course. The following are some other actions that people with MS can take to build and hone their resilience.
Maintain social connections—Having a strong and supportive network of family and friends is a vital element in helping people with MS to build resilience. It’s also critical to realize that learning how to accept help, and even to ask for it, will be an increasingly important part of keeping these relationships strong as the disease progresses.
Embrace flexibility—For someone living with MS, trying to continue doing the same things in the same ways often results in nothing but frustration. Instead, experts encourage people with MS to be open to new and different ways of solving problems and coping with challenges.
Practice self-care—When our minds and bodies are strong, it’s much easier to be resilient. Focusing on actions that help to maintain well-being, conserve energy, and reduce stress can go a long way toward helping patients with MS to develop resilience