Life with MS

 
By Lara M. Stepleman, Ph.D., Rebecca Floyd, Ph.D., and Elizabeth D. Eldridge, Ph.D.
 
  While holiday stress is a common issue, individuals with MS may be affected in different ways than the average person. Holidays are a time when people coping with MS often become especially aware of how their disease and its symptoms – particularly fatigue – change their ability to fully participate in holiday activities.
 
  Following the onset of MS, a person’s identity, or sense of self, often changes. That is, your view of yourself and of what is possible  becomes colored by the way you think about your illness. So if you label yourself as “disabled” or cast yourself in the “sick” role, you might shy away from holiday social
activities that could actually increase your happiness and well-being. For example, you might decline invitations immediately, without waiting to see how you feel on the day of the event, because it seems less embarrassing or impolite than making last-minute cancelations.
 
  Engaging in activities you used to enjoy can also heighten your awareness of how you have changed since your diagnosis. During holidays, you may have been someone who cleaned the house until it was spotless, even the areas that no one would see; cooked your favorite recipes two days in advance; or went all out decorating your home, turning it into a holiday wonderland. But perhaps now you have stopped altogether because, like many people, you believe that not doing an activity at all is better than not doing it as well as before, asking for help, or doing it differently.
 
  Avoiding the activity is also self-protective against potential hurtful comments from people who do not understand MS-related life changes – like the aunt who pokes the store-bought holiday pie and says, “It's a shame you don't want to bake anymore.” While avoiding embarrassment may seem worth the price of losing out on activities, the loss of contact with the important people in your life can have huge costs to your physical and emotional wellness.
 
  Isolation from others during the holidays (or at any time) – especially when related to stigma, shame, and fear of disappointment – may seem protective, but in reality you may be missing out on tremendous potential for support, compassion, and fun that can come from social interaction. In fact, too little social support can increase an individual’s risk of depression, which can interfere with sticking to your treatment plan and negatively affect your health. Over time, social avoidance can lead to a reduced network of friends and family who would be able to provide needed support.
 
  On the other hand, the holidays may bring us into contact with family members and friends who haven’t been supportive or encouraging. In this case, it would be appropriate to limit the amount of time you spend with such individuals. Instead, explore how MS support groups and organizations are celebrating the holidays. These events not only offer an understanding environment, but also provide opportunities to make new friends.
 
Coping Skills for Engaging in Social Activities
  Planning your social calendar allows you to select activities that will bring you and your loved ones the most enjoyment during the holidays. In addition, consider adopting one or more of the following coping strategies this year, and you may just surprise yourself and discover, or rediscover, your inner social butterfly.
 
• Set small goals and act on them, regardless of how you’re feeling emotionally. Sometimes,
we wait to engage in activities until we are experiencing positive emotions. However, if we wait for a particular emotional state to motivate us to act, we may be waiting a long time. Set a small weekly goal for engaging in social activity and follow through with it, regardless of your emotional state. For instance, set a goal to call a friend and wish her “happy holidays” or accept one invitation to a social gathering. Setting and meeting small goals will give you a sense of accomplishment, making it more likely you’ll meet your next goal. You might even have some fun along the way. Additionally, when you set this goal, make a personal list of reasons why it’s important to you and refer to it whenever you feel unmotivated.
 
• Change how you think to improve how you feel. Cognitive reframing is another useful coping skill that involves looking at a distressing or self-defeating thought from a new angle. For instance, you might feel sad or depressed when you think, “I can’t host dinner parties anymore.” Taking a different perspective, such as “I can still visit with friends, I just need to use my creativity and find ways to do it differently,” may help lessen these feelings.
 
• Focus on your strengths. Another trap we can find ourselves in is focusing on all the things we don’t do well. Try taking note of your strengths, instead. For example, you may not be great at remembering people’s names or going on lengthy holiday shopping expeditions, but you might sing Christmas carols with gusto or make terrific holiday cookies. Make a list of your strengths and ways that you can contribute, and look at it when you’re feeling discouraged.
 
• Increase your awareness of the present moment. If you find yourself feeling distressed, you may be stuck worrying about a past negative experience or what someone may think if you say or do the “wrong thing.” Mindfulness, a skill that focuses on the here-and-now, can be practiced by “anchoring” yourself to the present.
 
Mindfulness Exercise
 
Take note of five things in your current environment using each of the five senses (taste, touch, hear, smell, and see).
 
* What do you see right now?        
* What do you hear?
* Can you feel the clothes on your body?
* What do you smell?
* What do you taste?
 
Practice this when you’re not distressed, so that you can eventually use the skill effectively when you are nervous or upset.