The vast majority of people who have multiple sclerosis are diagnosed between the ages of 20 and 50 years. The disease thus affects people in their most productive years: young adults readying themselves to leave home in pursuit of academic, vocational, or social goals; men and women in the process of launching careers and families of their own; and those in middle age who are enjoying their productive years and planning for their retirement.
Since MS has little impact on life expectancy, it is likely the person diagnosed will be living and coping with its effects for many years. MS has often been compared to the “uninvited guest” that arrives at the door one day, complete with baggage, and never goes home. It moves into the household, using up space in every room of the house, and taking part in every family activity. Every person in the household needs to learn how to live and cope with this uninvited guest.
MS is unpredictable. Individuals with MS and their family members may have difficulty anticipating what the next day or week will bring, let alone the more distant future. Planning becomes difficult, creating an ongoing need for flexibility and creativity.
MS is expensive in different ways. In addition to the financial cost of MS, there is a costly drain on other family resources as well, including time, energy, and emotions. Families living with MS face the daily challenge of trying to distribute these valuable resources appropriately among all family members.
Living with MS poses an ongoing challenge to the emotional equilibrium of a family. The person with MS and family members experience feelings of loss and grief with every new symptom and each change in functional ability. Any progression in the illness requires family members to adjust to the loss, and to redefine themselves and the family accordingly. Anxiety and anger are commonly experienced by families as they try to cope with the uncertainty, change, and loss that accompany MS.
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?
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 on his or her particular situation. 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.
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.
Disruption of the family's rhythm
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, with each member having specific responsibilities within the family. 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 recognised at the time or not, this shift in roles begins to change the ways in which family members interact and communicate with one another.
Disruption in family communication
Talking about these kinds of changes within the family can be very difficult for a variety of reasons. First, since changes tend to happen slowly, families may not be sufficiently aware of their impact to discuss them as they begin to occur. Second, people often have difficulty talking about changes in family life that are caused by symptoms they cannot readily see or understand. MS-related fatigue, sensory symptoms, and cognitive changes are difficult to describe to others; they are easily misinterpreted by family members who cannot 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. 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 make them magically go away.
Important resources and barriers to their use
Fortunately, a variety of resources exist to help families live well despite chronic illness. Healthcare teams, voluntary health organisations, 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 utilisation 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, and access to professionals with expertise in MS is even more limited. In addition, many people do not make use of important resources even when they are readily available. Many families may not want to acknowledge the potential impact of MS on their lives, or to think about MS more than is absolutely necessary; some are 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 would be an indication of their own weakness or inadequacy. They do not recognise that these resources are the kinds of tools that might enable them to manage more effectively.
Becoming educated about the potential impact of MS on the family, and taking steps to protect the family's financial, social, and emotional well-being, can help each person feel less vulnerable in the face of this unpredictable disease.
* The above article is based on Chapter 1 of Multiple Sclerosis: A Guide for Families, edited by Rosalind C. Kalb, 1998, Demos Vermande, New York, USA. ISBN 1-888799-14-5.
Each family will develop a rhythm of its own.
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