Living with MS

Living with MS begins when the first symptom appears. The initial thought is to deny the problem and to ignore it. However, if the symptom persists, fear overcomes denial, often accompanied by self-directed anger. The fear is that of "going crazy" of believing that nothing is really wrong but it is "all in my head". Stress and fear build until the tests are completed and the diagnosis is confirmed. Often this is followed by a sense of relief that the problem is medical and not psychological. However, this relief disappears, and anger accompanied by grief once again surfaces. These feelings are often turned toward family, friends or physicians as if they were responsible for the disease. A lack of understanding leads to more anger, fear and a "why me" feeling develops.

In the newly diagnosed MS person, as grieving evolves into depression, it is accompanied by loss of sleep, change of appetite and feelings of despondency. This sequence results from decreased self-esteem, changes in self image, life plans, goals and values and frequently a fear of rejection by family and friends. Resolution of these feelings is hoped for at the end of the cycle, accompanied by the feeling of peace that comes with the understanding that life must go on. All of this results in an angry and despondent person. Anger is what shows on the outside but depression is the internal mood. The person feels betrayed by his own body. The anger alienates others just when support is most needed. This cycle has lead to the perception of an "MS personality". There is no evidence to suggest that a specific personality exists in people with MS. Rather a loss of self esteem brought on by the perceived loss of physical function leads to mourning these losses, which in turn results in the development of personality traits that may be perceived as very different from that of the "pre disease state".

MS can cause considerable unhappiness within families who also have to adapt to the disease and its consequences. Patterns can find it hard to cope, and are, in some ways, under more stress because they may consider they have the choice to stay or to go. If the basic relationship is poor, MS may be made a scape-goat for emotional and relationship problems. Separation can result and is more likely when the person who has MS, is female.

Anger, whether expressed directly or indirectly, is common in MS relationships. Patients may find it hard to express angry feelings, especially if they are dependent and fear rejection, or if the person without MS feels guilty. When feelings of resentment or guilt are hidden, relationships can become dishonest, and manipulative behavior or "games playing" can occur. An insecure person with MS can adopt an unnecessarily dependent role thereby creating resentment, or a caring relative might compensate for underlying wishes to reject by aggressive over-protection.

Children may become disruptive or attention-seeking if their needs are ignored; MS should be explained to them at a level that is appropriate to their age. They may be particularly distressed if they feel excluded, or if they believe that there is a frightening family secret. Some children learn to feel guilty either because they believe they are the cause of the parent's MS or because they fell that they are an extra and unwanted burden. This can lead to depression or to behavior problems at home or at school. Some children try to compensate by becoming very involved in helping a parent with MS. This can work out well, and many such children develop into mature and understanding adults. Some, however, grow up too fast and may miss their childhood becoming over-responsible "little adults" and finding relationships difficult in adult life.

The person with MS need not go through life waiting for the other shoe to drop. By understanding some of the psychological changes that accompany chronic disease, an active role can be taken to achieve a healthy mental state. The physically challenged must also win the "mental/emotional" challenge. There is no simple way to do this, but what is clear is that if one surrenders, one loses!

Key words: Multiple sclerosis, psychological disorders, family.