Symptom Management

The Emotional Challenges of MS Over Time

By Miriam Franco, Psy.D, MSCS

Several years after an initial diagnosis, those with relapsing-remitting MS may stop having relapses and will experience a gradual increase of their particular MS symptoms. This is often the sign of a transition to secondary progressive MS. However, because no two people with MS are the same, individual disease progression will vary, and will also depend on other factors, such as: which symptoms were present earlier, how early and effective MS disease-modifying therapies have been, and whether your symptoms can be managed with available treatments. Some symptoms worsen because of the production of new lesions, whereas others worsen over time because of neuronal damage during the disease course once relapses have ceased. Regardless of your disease course, many MS symptoms don’t simply create physical challenges, but emotional ones, as well.
Depression is one of the most widely reported emotional MS symptoms. Approximately 50 percent of those with MS experience episodes of depression, regardless of their disease course. While most with MS will experience “low” or “bad” days, the highest frequency of depression in the MS community is among those who have had a prior history of depression. Also, the highest rates of depression are prevalent within the first year of diagnosis and in those younger than 35.
Anxiety is another widely reported emotional challenge among the MS population, and it is easy to see why. MS symptoms are unpredictable and can wreak havoc with your need to plan and prepare for life and tasks of daily living. And with advancing age, we experience a greater need to plan and prepare. The highest rates of anxiety are correlated with younger age, when the effects of the disease and its management are still new.
Grief is another prevalent emotional challenge for the MS community. It is defined as a profound sadness in response to change or loss. It is not only present with the loss of a loved one, but is also a natural reaction to any change that threatens one’s sense of self. With chronic illness, it is typical to grieve initially with the diagnosis and then feel moments of loss again whenever a symptom returns or affects your functioning. Grief is considered to be a necessary first step in coping with a chronic illness, and if it is blocked, further psychological well-being will be limited. It is a natural process to experience grief followed by a period of adaptation.
Coping and adapting to the challenges of MS, especially the emotional ones, is imperative, but studies suggest that time may have a large role in your ability to do that. Higher rates of resiliency, or one’s capacity to tolerate and adapt to the fluctuating challenges of living with MS, are correlated with an older MS population. This suggests that with time, resilience increases, both from the experience gained in responding to the adversities of living with the disease, and from being able to grieve changes that are re-experienced when symptoms remind one of their loss of former functioning. As the pain of grieving gradually eases over time, one is able to begin to make positive adaptations to whatever changes have occurred.
The capacity to mourn the losses caused by MS and experience post-traumatic growth are key factors to coping well over time. Although psychiatric conditions are high among individuals living with MS, many do not exhibit clinically significant levels of anxiety, depression or other serious mental disorders. And if you do, it is the ability to maintain or resume psychological functioning in the face of adversity that is the key resilience factor. This does not mean that you never experience negative emotions or thoughts in response to pain, loss, or suffering. These experiences are common (and necessary) and are likely part of the resiliency process itself. In a resilient process, these painful states are temporary, or specific to particular challenges experienced. They may be experienced deeply or intensely, but they eventually fade to return again when a challenge re-emerges.
The ability to react, respond, and shift between feelings of pain or loss, and to continue to engage and make meaning promotes resiliency. Post-traumatic growth involves resiliency, but also includes:
• A willingness to find ways to appreciate life
• Developing increased personal strength or growth in one’s relationships
• Rediscovering or redefining purpose and meaning in life.
Thus, as we age with MS (or without it), it appears that our capacity to be challenged by limitations and suffering is effected by our ability to experience what feels “wrong,” different, or painful, and to also gradually experience what still remains “right” or meaningful. This seems to be a protective factor that keeps us on a steady course of active and engaged living. Thus, the grief, loss, pain, depression, anxiety, and other challenges of MS – whatever distress the disease brings – need to be met and responded to. In time, the ability to continue to adapt and develop both personal meaning and purpose continues to enrich and expand us, which promotes psychological well-being even as we enter later stages of life.