Some Words For The Family

Having a family member with a chronic illness puts an enormous strain on family relationships. Everyone must adjust and learn to cope. Tasks not only must be reassigned and the household routine upset or interrupted, but additional time and energy may often be devoted to caring for the patient.

This may be only an inconvenience if the illness is of short duration, but when the illness is chronic the adjustments may cause serious problems. It is not unusual for marriages to break down under the additional stress of chronic illness, especially when the partner who falls ill is the woman. We have high expectations of ourselves, our partners and of marriage itself. When illness intervenes and it becomes impossible to even approach (let alone fulfill) these expectations, relationships may literally come apart.

While it may not be true for all PP patients, families often expect more of a person with periodic paralysis  than they are able to give. Because PP is not highly visible and strength levels vary so much, it is easy to forget how disabling the illness can be. It is hard for the unaffected person to fully realize the enormous amount of effort and self-discipline it requires for the patient to perform even simple daily tasks. The loss of the sense of accomplishment, and the lack of control over the illness itself, cause distress enough to most patients.

Unfortunately, families often add to the psychological trauma by resenting the changes imposed by the illness. Roles and relationships may change as the family goes through the grieving process and adapts to the reality of the situation. It is important to maintain realistic expectations, ones which allow the patient both support and independence. Some families find this a difficult process and may need to seek outside counseling. It is unrealistic to expect total patience, total self-sacrifice and unconditional acceptance of anyone. There will be good days and bad, times when the household runs smoothly and times of total chaos.

A great deal of satisfaction can be derived from working together to overcome obstacles. Difficult circumstances can bring families closer together. Unfortunately, many of us have not been taught to persevere in the face of adversity. Past generations were brought up to expect a great deal of hard work and very few comforts. They didn't anticipate easy lives. This very attitude helped them through times of hardship and crisis. Considering that life itself is full of challenges, it seems that this philosophy could be as useful to us today as it was to our ancestors.

The expression of mutual support and a determination to see the crisis through can go a long way toward cementing relationships. Family counseling can be a big help in adjusting to the changes that chronic illness brings to a home. It is very helpful if the entire family understands PP and works to minimize its impact together.

Adapted from, “You, Me and Myasthenia Gravis”; Third Edition; Deborah Cavel-Greant; Ed: MW Nicolle MD, FRCPC, D.Phil.; Ku:Reh Press, 2006, Used with permission, © Deborah Cavel-Greant