When treating MS, much attention is focused on physical symptoms. Your doctor may ask about your gait, balance, vision, numbness, and other common MS-related impairments. How you feel on the inside is often ignored or overlooked. This is unfortunate, since people with MS frequently state that the emotional effect of the disease can be as disabling as its physical symptoms.
Typical emotional responses to chronic illness may include denial, fear, anxiety, low self-esteem, grief, loss, anger, and loneliness. It is normal and understandable to experience these feelings as we struggle to cope with this chronic, unpredictable, and often invisible disease. Since our emotions play a critical role in the quality of our lives, it is imperative that we acknowledge and learn to deal with the various feelings that accompany MS. Fortunately, much can be done to manage these uncomfortable feelings. Here are descriptions of the different emotional responses you may experience along with effective strategies that can help minimize the effect MS has on your overall sense of well-being:
Denial
For many, denial is a coping mechanism that is used to buy time as we catch up psychologically to our current physical condition. However, in time, acceptance must be embraced in order for us to become proactive and take charge of our healthcare. This may include accepting medical treatment, assistive devices, and help from others as well as making lifestyle changes that support our health, such as changing our diet or quitting smoking. When acceptance can be viewed as the catalyst to managing our health, rather than “giving in” to the disease, it becomes a powerful tool.
Fear
Fear is a natural response to the unpredictability of this disease. We may find ourselves worrying about all the things that might happen in the future. However, worry is somewhat like praying for something you don’t want. Putting our attention on the things we want to avoid creates negative energy that brings us down. One strategy to manage fear is to make a standing appointment with it. Commit to spending five minutes a day with your fear. Take this time to do nothing other than feel your fear and worry. After the five minutes are up, you are done. Imagine putting your fears in a box, shutting the lid, and putting the box under your bed. Now you are free to go about the rest of your day without worry. This exercise helps to contain free-floating anxiety and literally puts fear in its place.
Anger
It is not unusual for someone with a chronic illness to experience intense bouts of anger. Some feel anger at God, or their doctors, or their loved ones. Sometimes the anger is even directed inward. This is another completely legitimate and understandable reaction to the frustrations of this disease.
One effective way to deal with anger is to ask a few questions: Who are you really angry at? What are you really angry about? And finally, does this anger serve you in any way? Sometimes anger can be a useful tool. For instance it can prompt us to speak up when we need to advocate for ourselves. Anger can motivate us to take action when needed. If you can use anger in a productive way then it can be a helpful emotion. However, if your anger is only serving to alienate you from others or to make you feel badly about yourself, then it is time to let it go. This can be done through meditation or the breath. Just inhale deeply and imagine your anger leaving your body and soul with your exhale. Do this several times in a row. Practice this conscious exercise, rather than simply reacting the next time you feel nonproductive anger.
Low Self-Esteem
MS often alters our sense of self. We see changes in our bodies, our minds, and our abilities. We feel guilt over our inability to work or to help around the house. We may beat ourselves up over these many changes, even though we have little control over them. When our self-esteem is suffering, it helps to remember that ultimately we decide how we see ourselves. This means that we can choose what we value about ourselves. What we value and what we contribute may change over time and this is okay. When we focus on what we can still do, rather than what we can no longer do, we feel better about ourselves. Try not to compare yourself to how you used to be, but give yourself credit for the things you do get done and for the efforts you make within your limitations.
If you are able to volunteer, do it. Nothing makes us feel better than helping another person who is in need.
Grief/Loss
Many of the challenges to our self-esteem are actually connected to losses. MS is a unique disease in that it can present continual losses over a long period of time. As soon as we adjust to one change, another change may come along and knock us for a loop.
Loss is never easy and experiencing grief is not a task to simply complete and move on. Grief is a complicated process and although there is no one way to do it correctly, one thing is clear: each loss must be acknowledged. When we discuss our losses and actively mourn them, we feel validated. It is important to have others bear witness to our losses and acknowledge them as well. Once we allow ourselves to feel the depth of our losses, we are released to move forward and to shift our focus toward what we still have and what we are grateful for today.
Loneliness
If you feel lonely at times with this disease, you are not alone. Most people with MS feel misunderstood to some degree. The invisibility of symptoms, our efforts to protect loved ones from how bad it is, other people’s unwillingness to understand or make accommodations, all can lead to feelings of loneliness.
Furthermore, isolation can occur as physical limitations, transportation issues, the need for assistive devices, fatigue, bowel and bladder problems, and even cognitive issues cause us to withdraw or stay home. However, connecting with others is the most powerful coping skill we can rely upon to combat many emotional issues, so it is very important to find ways to reach out.
Using the internet to visit chat rooms and websites is a convenient way to get linked together with others. Accessing MS-specific programs that are offered through MSFocus: The Multiple Sclerosis Foundation, the National MS Society, and the Multiple Sclerosis Association of America can also help you to feel less alone. There are a variety of free programs including webcasts, telephone conferences, support groups, and video-tape programs that are available to you. Simply contact these MS organizations and ask about their services.
There may be periods when your feelings become too much to handle on your own. If this is the case, you should seek counseling or expert advice to help you get through the tough times.
Bring it all together
Ultimately our wellness depends on finding a balance between our physical, emotional, and spiritual needs. Envision yourself as a stool that needs all three legs to be in place in order to stay upright and strong. So another critical strategy needed to weather the MS storm includes nurturing our spiritual life.
You don’t hear much about developing a spiritual life when talking about physical or mental health, but people who have a strong spiritual foundation seem to cope the best with the physical and emotional challenges of this disease. These folks tend to stay centered and grounded, no matter what else is going on.
Spirituality is very personal and individual. However, no matter how you define it, one common dimension seems to be a dedication to something greater than yourself. Spirituality gets you beyond yourself and out of yourself. It helps you to expand and to connect. Spirituality can be related to religion, song, prayer, meditation, nature, and service to others. How you define it is up to you. The important thing is that it has meaning and that you practice it regularly.
It is also helpful to identify your bliss. Ask the question, “What makes you want to fight to stay well?” The answer may be a loved one, for instance a child, grandchild, spouse, lover, friend, or pet. Perhaps it is a hobby, unfinished work, a goal, or creative process. Write down your bliss or have a picture of it somewhere that you can see every day. Knowing your bliss, knowing where you want to direct your energy, and knowing what gives your life meaning is essential for mental health and wellness. Many people go through life never asking these questions until it is too late.
What each of us must come to realize is that although we don’t choose to get MS, we do choose how we deal with it. We can make the choice to be active and to take charge of our lives on a daily basis. In fact, illness can often create a sense of urgency and can prompt us to make positive changes that enhance our health and overall sense of wellness. It is up to each of us to make the most out of our lives and our bodies no matter what challenges we may face.
(Last reviewed 10/2009)