OVER THE YEARS, families tend to develop a rhythm of their own - a reasonably smooth and predictable way of carrying out the routines of daily life. Each of the adults in the household has, by spoken or unspoken agreement, taken on certain important functions in the household. As they grow and develop, each of the children also takes on an increasing number of age-appropriate chores and responsibilities. If one person in the family becomes unable to carry out his or her particular role(s), the rhythm of the entire family is upset. Whether it is recognized at the time or not, this shift in roles begins to change the ways in which family members interact and communicate with one another. The disabled person may begin to feel "sidelined" - out of the mainstream of family life. A spouse who needs to take on more and more of the responsibilities in the household may start to feel overburdened and deprived of the old partnership. Young children may gradually find themselves in a caregiver role that threatens their own feelings of security and well-being.
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| Information About Multiple Sclerosis |
Disruption In Family Communication
TALKING ABOUT THESE kinds of changes within the family can be very difficult for a variety of reasons. First, these changes tend to happen slowly and therefore outside of most people's day-to-day awareness. Families do not talk about them at the time because they are not aware that the changes are occurring. Second, people often have difficulty talking about changes in family life that are caused by symptoms they cannot readily see or understand.
A person who is experiencing MS-related cognitive changes or severe fatigue may find it difficult to describe to others how these symptoms are interfering with daily activities. Similarly, family members may become frustrated by their inability to see or understand why family life is not proceeding as smoothly as it once did. Third, family members tend to be quite protective of one another, with the result that painful feelings, questions, and concerns are often left unexpressed. No one wants to open a Pandora's box of stressful issues that have no apparent solutions. And fourth, people sometimes feel that "the less said, the better," as though talking about problems will confirm that they actually exist, and not talking about them will magically make them go away. The result of all this may be the "big, gray elephant phenomenon" entire family is tiptoeing around this big gray elephant in its midst and nobody quite knows how to mention it.
Important Resources and the Barriers to Their Use
FORTUNATELY, A VARIETY of resources exist to help families live comfortably and productively with chronic illness. Healthcare teams, voluntary health organizations, educational materials, and various types of professional and self-help groups are some of the tools available to support families' coping efforts, Unfortunately, there also seem to be significant barriers to the effective utilization of these resources.
Some of the barriers are social and economic while others are much more personal and emotional. Access to quality healthcare is not universal in this country, and access to professionals with expertise in MS is even more limited. Particularly in this new age of cost containment and managed care, individuals who have MS may feel a growing pressure to monitor and manage their own care.
Of even greater concern, however, is the fact that many people do not make use of important resources even when they are readily available. Many families refrain from seeking help because of reluctance to acknowledge the potential impact of MS on their lives, or to think about MS more than is absolutely necessary. They may be afraid that thinking about current or potential problems will somehow make the problems seem more real. Other families seem to feel that seeking outside help or support is an indication of their own weakness or inadequacy; they would rather "go it alone." They do not recognize that these resources are the kinds of tools that might enable them to "go it alone" more effectively. To find out more, you can check out Information About Multiple Sclerosis.