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| Multiple Sclerosis Today |
What is it about MS that makes its impact on the family so great?
MS is a chronic disease ALTHOUGH WE NOW have several treatments designed to modify the course of the disease, we still have no cure for MS. Since the illness has little impact on life expectancy, the person diagnosed with MS will likely be living and coping with its effects for many years. MS has often been compared to the "Uninvited guest" who arrives at the door one day, complete with baggage, and never goes home. The guest moves into the household, using up space in every room of the house, and taking part in every family activity.
MS is unpredictable
No ONE CAN predict with any certainty how a person with MS will fare several years down the road. While it causes severe or incapacitating disability for relatively few, it creates a bewildering question mark for all. 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. As a result, the established rhythms of daily life can be severely disrupted as family members attempt to respond to the demands of the illness. Planning becomes difficult, creating an ongoing need for flexibility and creativity.
MS is unpredictable not only in the course it follows, but also in the kinds of symptoms it may cause. No two people have MS in exactly the same way. Since the disease can affect almost any system in the body, people feel vulnerable both physically and psychologically. In addition to the more visible symptoms (e.g., walking difficulties or imbalance), MS can cause less obvious symptoms (overwhelming fatigue, bladder and bowel problems, changes in sexual function, visual impairment, and sensory changes), as well as intellectual and emotional changes. "What's next?" is the question commonly asked by individuals and families living with MS. Unfortunately, it is difficult to predict the answer.
MS is expensive
ILLNESS OF ANY kind can be expensive, and a chronic disease that appears during a person's most productive years can have major financial consequences for the entire family. In addition to this more obvious cost in dollars and cents, there is a significant drain on other family resources, including time, energy, and emotions. Families living with MS face the daily challenge of trying to distribute these valuable resources evenly among all family members. MS should not be allowed to sap any more of these resources than it absolutely needs; otherwise, the needs of other family members may go unmet.
Energy
THE ENERGY DRAIN on families living with MS comes both from the effort required to do things differently and from the emotions that surround these adjustments. Families who have experienced changes in their daily routines because of MS say that "nothing is easy or automatic any more ... everything takes so much effort." Part of this effort involves finding alternative ways to get things done; part of it involves dealing with the feelings that each person has about having to incorporate these changes into daily life.
Time. MS tends to slow people down. The various physical and psychological symptoms of the disease interfere with the activities not only of the person who has the illness, but also of anyone in the household who shares those activities. Time is a valuable commodity for today's busy families, and the need to slow the pace, postpone activities, or rearrange schedules can produce a new kind of stress for all concerned. To find out more, you can check out Multiple Sclerosis Today.