Our lives are defined by a balance between stress and serenity. Too little stress, and life can seem dull and lacking challenge. Too much stress, and we feel overwhelmed and powerless. Most of us have a sense of what the right balance would be even if we rarely have the power to make that balance happen consistently in our lives.
There is a saying, “You can’t control the wind, but you can control the sails”. If life’s challenges are the wind – unexpected and unpredictable – the sails could be many aspects of our own ability to weather stress, from having the right resources in place, to having friends and family to help us through, to our own innate ability to cope with stress. Another way of thinking about this, is with the word, resilience. One definition of resilience is our ability to rebound from adversity and to adapt to stressful events.
Resilience is particularly important when it comes to the experience of chronic illness. When someone is newly diagnosed with a chronic illness, it can seem to them and their loved ones like the winds of stress have elevated into a perpetually ongoing hurricane. Nothing else about life calms down, but a new set of stressors are now put into play: the uncertainty of a diagnosis, the tragic losses and setbacks that can make a person feel as if they can no longer achieve their dreams, and the worry of friends and loved ones.
Multiple sclerosis (MS) is especially cruel in this regard. In MS, the long-distance nervous connections between the brain and body break down when attacked by the body’s own immune system. The resulting lesions, or scars, can slow and sometimes even stop communication between the brain and the body. The result is altered function, of a leg in motion, a throat in swallowing, or the function of the brain itself.
The diagnostic categories of MS try to help a person make sense of the potential course of neurological losses. For example, in relapsing-remitting MS, changes in function are expected to be sporadic, followed by periods of remission and partial recovery. In the various progressive forms of MS, there are more or less steady periods of progression, sometimes interrupted by periods of partial recovery or the reduction of exacerbations.
The unpredictable course of different neurological losses in MS can challenge anyone’s resilience. Fortunately, the source of a person’s resilience is more than just the muscles in their body or the brains in their head. Resilience is shared within a family, even within a larger community. It is a communal effort as much as an individual one.
Research suggests sharing resilience between family members is a teachable skill. A good example is a digital calendar whose events are shared between family members. Once taught, the use of this helpful strategy can become second nature. We think it is the same with skills related to resilience; they become easier to use with time.
In the next post, we will look at some studies of resilience in MS and consider them from the perspective of this shared resilience concept. We welcome you to join us in learning!