All during August, we have been focusing on the many facets of wellness for the ALS community during National Wellness Month. In doing so it has probably become clear that there is no one-size-fits-all definition of what “wellness” means. This is even more so for people living with ALS, their families and their caregivers—where each day brings challenges big and small that can present barriers to attaining “wellness.”
How people in the ALS community can and do find a path to wellness despite those daily challenges was the subject of our recent webinar “Building Resilience When You're Affected by ALS: Mental Toughness and Courage” presented by ALS Association Care Services Manager Amber N. Johnstone (MSW, LISW-S).
“Some of you might be asking ‘Why are we talking about this’?” Johnstone said. “I think you can think of resilience as an important tool to help you deal with really hard things. And I think it's no secret that ALS is a really hard thing.”
While there are people who may seem to be more naturally resilient than others, you can learn resiliency to improve your overall wellness, no matter the challenges you face. During her presentation, Johnstone explored four areas that go into to building resilience and becoming a more resilient person: intention, positive emotion, repetition and time.
Intention
Intention is about choosing to understand how ALS affects you both mentally and physically and how you can set boundaries to allow you find your path that has meaning and purpose for you. For some, intention will mean accepting that there are things that are beyond their control, and not expending emotional energy on those things. It also about finding your support network and understanding that you are not alone in your struggle.
“Receiving an ALS diagnosis (is traumatic),” Johnstone said. “When it comes to understanding how trauma affects you, it's important to know that trauma or negative experiences can affect you physically and emotionally. So one of the things you can do to help build resilience is just to understand how your trauma is going to affect you individually.”
Positive Emotion
Studies have shown that having positive emotions or thoughts is beneficial to everyone’s mental health and wellbeing. There are many things that you can do to work on having a more optimistic mindset, including practicing gratitude by journaling or otherwise identifying things that you're grateful for every day. Another tool many find helpful is emotional regulation, which is learning to identify your emotions and be able to experience them without judgment and not allowing yourself to not hold on to really intense negative emotions.
Johnstone admits that this can be easier said than done, but she notes that there are some characteristics that can help. “Things that can help improve positive emotion are humor and relaxation,” she said.
Repetition
Unfortunately, you cannot practice resilience until you are faced with challenges and adversity. And unfortunately, people living with ALS are faced with challenges and adversity every day. Facing these difficult situations with resilience is not a one-time thing; it takes practice to learn like any other skill.
“(You) might not be good at it the first time you try it, you might not be great at it, so fall back on that intentional practice,” Johnstone said. “Know that this is something that is a new skill. It's just like strengthening a muscle. It takes time and you have to keep practicing. You have to keep doing it.”
Time
In addition to repetition, learning to be resilient takes time. “You have to have experiences in order for you to have something to respond to, but also it just takes time for you to learn how to do these things,” Johnstone said. “So keep that in mind, know that these things don't happen overnight.”
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