MS comes with many challenges for both the individual and family living with MS. As a chronic condition, MS is present every day even when medication is taken, stretches are done, and a positive attitude is maintained. Symptoms that interfere on Monday may not get in the way on Wednesday. Changes occur in family roles and everyday functions. MS can be expensive and usually requires many decisions to be made over the years, especially about treatment. Sounds pretty challenging doesn’t it?
The challenges tend to change over time so that challenges faced at diagnosis are often different than the challenges occurring later when MS symptoms are more likely to interfere with parenting, family activities, working, and driving. Invisible symptoms seem to be more challenging than others. Symptoms such as depression, pain, fatigue, and changes in cognitive functioning are some of the most difficult symptoms to cope with whether you are the person with MS or a family member. Sometimes family members underestimate the severity and impact of these symptoms. When symptoms are minimized (often with good intentions), it can be very frustrating and discouraging for the person with MS who is needs support and understanding. Instead of assuming, it can be helpful to ask “how is your MS fatigue different than fatigue before MS?” or “it would help if you described your pain.”
Learning about MS and communicating are effective strategies for coping with the challenges. Accurate information provides a common language for the whole family including children to talk about problems and generate solutions. Keep in mind that not everyone in the family is likely to learn in the same way (e.g., internet, educational programs) or agree about how to deal with MS issues. Some people become preoccupied with MS and think about little else, while others deny that MS is even in the house. Over time, many people become expert at engaging in healthy denial by balancing MS with the rest of life. Although unwanted, MS can provide an opportunity to set new priorities, nurture important relationships, reduce stress, and develop a healthier lifestyle.