Navigating Change and Loss with MS

Introduction

Change is part of our lives. We strive for some of those changes – for example, growing up, getting an education, finding a partner, or winning the lottery. Others may be thrust upon us – for example aging, losing a loved one, or being diagnosed with a chronic illness. All changes, whether positive or negative, can be challenging. If you think about getting a new job, starting a new relationship, or having a baby, the challenges as well as the pleasures are pretty obvious.

Similarly, a job loss or a new diagnosis pose significant challenges. But all of these experiences also offer opportunities for personal growth as well as feelings of mastery and pride. In other words, challenges can lead to enhanced resilience and confidence in one’s ability to bounce back and move forward. Positive and negative changes can also alter the way we see and feel about ourselves and the way others perceive us and relate to us. 

Whether one is a person living with MS or a support partner, this progressive, unpredictable disease creates a variety of challenges. People may experience a loss of control over their lives; independence may be challenged; relationships may be altered. But each of these challenges also offers opportunities. So how does one build a feeling of resilience in the face of the changes and losses that MS can cause? As symptoms evolve, abilities change, and life roles at home and work are altered, how does a person move toward personal growth? 

Step 1:

Grieving over the losses that occur, beginning with the diagnosis of a chronic illness, is step one. Grief is a normal, natural reaction to loss, and the first step toward integrating the change into one’s sense of self. Grief often triggers a search for deeper meaning. Spirituality can sustain you through times of crisis and loss, enlarge your worldview, and increase your compassion for yourself and others. It is a sense of connection to something more encompassing, or what has been described by Landis Vance as “jumping out of yourself.”

It does not require belief in a personal God, and for many may begin instead with a connection to nature, to art, to beauty. The challenge with MS, is that grief recurs each time that the disease takes away something important from a person’s life.

People often ask how to “become more spiritual” or how to “introduce spirituality into their lives.”

Here are some steps to try: 

• Acknowledge your losses and disappointments to someone who will not try to fix or blame you. 
• Make a habit of noticing things that warm your heart 
• Go to a place that triggers a sense of heart-connection and be still, soaking it in 
• Meditate with recorded meditations 
• Pray if that is comfortable for you 
• Create, or play music, take a walk, read something you find meaningful 
• Walk a labyrinth, outdoors if possible 
• Share your spiritual self with like-minded other 

Step 2:

This is the evolution from acceptance to adaptation. Acceptance involves acknowledgement that change has taken place.  Moving from acceptance to adaptation means using your creative energy to solve problems, find solutions, and build a sense of confidence that you can manage the challenges that come over time.

The key components of adaptation are:

• Focusing on “battles” you can win rather than a “war” that can’t be won (yet) 
• Capitalizing on your strengths/past successes 

• Building your team 
• Identifying attitudes that get in your way 
• Identifying helpful tools and resources 
• Taking care of the whole you – attending to your overall Wellness 
• Enjoying new-found interests/abilities 

• Asking for help when you need it 
• Finding your spiritual core 

As you work to adapt to the changes in your life caused by MS, it is essential for people with MS and their support partners to pay attention to their mood. Depression and anxiety – which are very common – can interfere with effective problem-solving. Early and ongoing screening can identify these common emotional changes, which then paves the way for effective treatment.

People with MS also need to be alert for changes in their thinking and memory since these changes can threaten a person’s self-esteem and self-confidence, impact planning and problem-solving, and affect interactions with others. 

Step 3

The goal of adaptation, which is to “find a place for the illness while keeping the illness in its place” (Gonzalez et al., 1989) – in other words, to make space in one’s life for MS without giving it more space than it really needs. Mental health professionals and spiritual advisors can be helpful for people with MS and support partners who need some support while working to take this third step. 

Here is an activity that you can do on your own and with your support partner: 

If you are a person with MS, draw a circle representing a pie on a sheet of paper. Then ask yourself “how big a slice of my life pie is the MS? Is it too big a slice? A reasonable size?” 

If you are a support partner, draw a circle representing a pie on a sheet of paper. Then ask yourself “how big a slice of my life pie is my partner’s MS? Is it too big a slide? A reasonable size? Not as big as it should be?” 

Do this exercise independently and then compare your responses. And consider repeating the exercise every few months or so. This can lead to very helpful conversations between the two of you. If you encounter difficulty with talking about the impact of MS on your lives, or your efforts to adapt to the changes it brings, conversations with a mental health professional and/or a spiritual advisor can be very helpful.