LIVING WITH MS poses an ongoing challenge to the emotional equilibrium of a family. Both the person who has MS and family members experience feelings of loss and grief with each new symptom and each change in functional ability. Each progression in the illness requires the entire family to adjust to the loss and redefine themselves accordingly. "Who am I now that I can no longer do some of those things that helped to define me as me?" "Who are we as a couple now that our partnership is being redefined by MS?" "Who are we as a family now that our roles have changed and our relationships to each other and to the community are changing?"
 |
| Understanding Multiple Sclerosis |
Along with grief comes anxiety over being unable to predict what the future will bring. While all people live with uncertainty, most are not so aware of it on a day-to-day basis. As adults, we tend to take for granted our ability to plan and look forward to events. Families living with MS sometimes feel overwhelmed with "what if's."
Anger can also become a part of life with MS. When uncertainty, change, and loss threaten the family's sense of order and control, individual family members may feel increasing resentment - toward the MS, toward one another as gradual shifts occur in their roles and relationships, and even toward themselves for being unable to do the things they want or need to do.
The ebb and flow of these emotions can take a toll on even the most secure and stable families. Learning to recognize, communicate, and share these feelings with one another helps family members to cope with them more comfortably.
Challenges to Family Coping
FAMILIES EFFORTS TO cope with the intrusion of MS into their lives are challenged not only by the complexities of the disease, but also by the complexities of the families themselves. What is it about families that complicates the coping process?
Individual Needs and Coping Styles
THE FAMILY UNIT is made up of individuals, each with a unique personality and coping style, as well as age-appropriate needs and goals. Each person in the family will see the MS in a slightly different way, and respond to its demands in terms of the way it impacts his or her particular situation. Thus, the MS will mean something different to the husband with MS who can no longer handle his construction job, his wife who needs to take a job outside the home, his young daughter who relies on him to coach the soccer team, and his teenage son who suddenly finds himself with a host of new responsibilities around the house. Therefore, the family's efforts to deal with the disease cannot be seen as a unified, coherent process, but rather as the sum total of individual, sometimes conflicting, coping efforts.
For example, a woman might respond to her diagnosis by wanting to read everything available about MS and its treatments, while her husband and children want to read and think about MS as little as possible. Or, a woman might feel the need to discuss her husband's MS with friends, relatives, and even acquaintances, while he desperately wants to keep it a secret. While each of these coping strategies might be perfectly valid, the difficulty arises from the fact that different members of the family may be trying to utilize them simultaneously.
Similarly, a child's need to know and understand what is happening to Dad may conflict with the family's wish for privacy. Not only do young children have trouble keeping secrets, but they are also unable to appreciate the potential impact of this kind of information on their father's employment or place within the community. As another example, the family's need to engage in effective financial planning may fly in the face of their need to deny the possibility of future disability. In other words, the family's response to the MS is not a simple one. At any given point in time, it is a reflection of the feelings, attitudes, needs, and priorities of each of the people involved. To find out more, you can check out Understanding Multiple Sclerosis.