Health & Wellness

The contents of this column were developed under a grant from the Department of Education, NIDRR grant number H133B080025. However, those contents do not necessarily represent the policy of the Department of Education, and you should not assume endorsement by the Federal Government
 
As a chronic condition, treatment of multiple sclerosis often includes several healthcare providers involved in the medical decisions and direction of your healthcare planning. This system of professionals providing testing, diagnoses, and treatment options is considered the medical management model of chronic disease management. The medical management model includes all medical-based aspects of your MS, including prescriptions, visits with primary care providers and MS specialists, and rehabilitation.
 
While medical management is an important piece of maintaining good health when living with this condition, the effects of MS symptoms are not limited to your twice-a-year visits to your neurologist. You experience the symptoms of MS everyday, and, as such, your symptoms require management everyday. 
 
Self-management is a philosophy of chronic disease management that acknowledges that living with MS is an ongoing experience. And it has been found to be an empowering strategy to improve health and reduce negative effects of symptoms for people living with many different types of chronic disease ranging from diabetes and heart disease to HIV.
 
After all, you are ultimately the one in the driver's seat navigating the day-to-day aspects of your care and well-being. You are the expert on how your fatigue feels in the morning versus the late afternoon. You are the expert on where the pain in your legs flares up the most. You are the expert on how your symptoms affect your mood.
 
This insider’s perspective puts you in the best position to make decisions about which medical and nonmedical strategies you use to manage your MS. You are also in the best position to reduce negative effects that your MS symptoms have that prevent you from living your life the way you want.
 
Putting Your Knowledge to Work
 
The question is, how do you translate your expert knowledge of your MS experience into positive life changes? Self-management training programs are currently being conducted through some research universities and health clinics across the country to teach this approach to people living with chronic diseases. This training involves a combination of education and skill-building opportunities to give individuals the tools they need to manage their symptoms. As a result, they can then participate more fully in life activities that are meaningful to them. 
 
Self-management acknowledges that MS symptoms do not only affect your body and physical experience, but also influence the way you think, how you feel, and the actions you decide to take. For example, pain, fatigue, and other MS symptoms may change the way you grocery shop or how you feel at an all-day music festival in the sun. Your symptoms may affect how you communicate with coworkers or how you feel about your role in your family life. Treating MS solely with medications to simply affect the physiological processes involved falls short of addressing the whole picture.
 
This is why self-management involves strategies that intervene at multiple levels: mind, body, emotion, and actions. These four domains of experience are intertwined, each affecting one another. Let’s look at an example of how these domains of experience play out in a situation.
 
A Portrait of Self-Management
 
Lisa is on vacation exploring a seaside town with friends when her leg begins to feel very heavy and starts to drag. This physical experience prompts her to think, “This is going to ruin our whole afternoon. My friends are going to be so annoyed that I am slowing them down.”
 
These thoughts, in turn, bring up a wide variety of emotions in her, making Lisa feel frustrated with her body, overwhelmed and sad that she has to deal with this right now, and worried about how her friends are going to respond to the situation. She changes the way she acts, withdrawing from the conversation, and stops taking pictures of the scenery. Her depressed mood then makes her leg feel even heavier and the rest of her body tenses in response to the stress of the whole situation. 
 
There are several ways that Lisa, in the situation above, could utilize self-management tools to improve her situation and lessen the negative impacts that the flare-up in her leg is having on her day. Here is what it might look like if she were to draw on positive self-talk skills:
 
Lisa is on vacation exploring a seaside town with friends when her leg begins to feel very heavy and start to drag. She initially begins to think, “This is going to ruin our whole afternoon. My friends are going to be so annoyed that I am slowing them down.” Anticipating that she may be about to get caught in a negative cycle of thinking that could make the situation worse, Lisa challenges her thoughts and replaces them with: “Although this is annoying, I don’t need to let my leg ruin my day. My friends will understand that I need to rest for a little while.”
 
This new line of thinking prevents her from becoming emotionally overwhelmed and prompts her to communicate with her friends to get her needs met rather than withdrawing from her sightseeing. After resting, she feels better and enjoys the rest of the day with her friends.
 
Maximizing Your Skills
 
Self-management training gives individuals the opportunity to learn and practice a variety of skills that can be implemented in many situations.  
 
Unlike some chronic disease management models that focus primarily on the problems and negative effects of the disease, the philosophy of self-management comes from a strengths perspective. It acknowledges that every individual brings to the table unique life experiences, knowledge, and skills in which they already excel. It is by tapping into your strengths and building your capacity to handle challenges in new ways that gives you power to be in control of how MS affects your life. 
 
Self-management encourages you to look at your well-being with a holistic, proactive approach. As an effective self-manager, you learn to go beyond a putting-out-the-fire approach of treating MS symptoms and their effects after they cause distress. With skills and practice, you will be able to anticipate common disruptions that symptoms cause in your life and be able to take preventative steps to reduce or eliminate the negative impacts those disruptions might cause. As a result, you will enjoy many benefits. 
 
Research has shown that people who are self-managers have more confidence in their ability to address problems such as pain, fatigue, and depressed mood. They are able to better communicate their needs to get improved support from others and strengthen relationships. There is also evidence that feeling more in control of symptom management improves pain, mood, psychological functioning, and daily functioning. 
 
Getting with the Program 
 
Self-management programs may differ somewhat in the specific skills taught, depending on the disease and symptoms needing to be managed. Yet all of the programs are about being an informed healthcare consumer who knows about your own condition and treatment options. In addition to the skills listed above, self-management programs may also include instruction in decision making, resource utilization, and individualizing skills.  
 
Jamie Wazenkewitz, MPH, MSW, LSWAIC, is a research counselor for the Multiple Sclerosis Rehabilitation Research and Training Center at the University of Washington.
 
Kara McMullen, MPH, is a research manager for the Multiple Sclerosis Rehabilitation Research and Training Center at the University of Washington.
 
Dawn Ehde, PhD, is an investigator for the Multiple Sclerosis Rehabilitation Research and Training Center at the University of Washington.
 
 (Last reviewed 7/2010)