COPING WITH FAMILY STRESS
AFTER
REYE’S SYNDROME
by
National Reye's Syndrome Foundation, Inc.
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PUBLISHED BY:
NRSF Publishing
Coping With Family Stress After Reye's Syndrome
© 2011 by National Reye's Syndrome Foundation. Inc.
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COPING WITH FAMILY STRESS
AFTER
REYE’S SYNDROME
A book for parents who have experienced the trauma of Reye’s Syndrome
Grief and guilt are the common denominators of all families whose children suffer from Reye’s Syndrome, whether the child dies or whether he survives normally or with brain damage. The parents of children with brain damage from Reye’s Syndrome must face the reality that the child they are taking home from the hospital is not the same one they took there. Even the parents whose child has survived Reye’s must still go through the horror of seeing what must be done in order for their child to survive. All these families go through great shock and great hurt.
If you have a loved one who has had Reye’s Syndrome, you need not be told what grief is. You have felt it. You have lived it. But, while grief is a unique experience for everyone, the one universal side effect of grief is stress. Much of this stress is brought on by the anger that is often left after the initial grief subsides. Coping with family stress after Reye’s Syndrome strikes is the subject of this publication.
The following information is primarily based on discussions with Reye’s families or with other families in similar situations.
Reye’s Syndrome parents may be living with an anger that is directed at a variety of targets, whether it be God, hospitals, doctors, or even themselves. If a person lives with guilt from their experience with Reye’s, they may find themselves dealing with “if onlys” a lot of the time and may find that mood swings are common to their day. Marriage problems are very typical.
Stress in the Marriage
Most couples report marital difficulties after a child of theirs has suffered or died from an illness such as Reye’s Syndrome. These problems usually occur because the husband and wife deal with their feelings in different ways and at their own pace. Neither spouse is wrong…just different. And differences can create rifts between the couple.
You can never be totally prepared for a crisis, but you can learn to deal with your feelings. These feelings must be coped with gradually and in stages. Understanding these stages and the attitudes and problems inherent in each can be the key to coping with the stress a person has to face.
Almost all families faced with the crisis caused by Reye’s Syndrome go through the following five stages, although the depth to which they experience them is colored by the depth of their experience with Reye’s.
STAGE ONE is when couples worry about each other’s reactions after the numbness from their experience has worn off. They may not be able to give comfort or take comfort. Everyone’s reactions are unique, but most people in this stage have trouble making decisions or concentrating. They have trouble carrying on conversations and find their attention span is short. They may also appear very calm even though they are actually very anxious. At this stage, there may be physical symptoms, such as nausea or headaches. Some people may want to be left completely alone and may resent being given advice, especially when being told they will get over it. And as much as the couple may love each other, they may not even want the other one’s presence. Couples may blame each other for what has happened. What they need at this point is to give each other space to sort through their emotions and to reassure the other spouse they are there if needed.
STAGE TWO is the illusion of life being normal again. The human spirit has a remarkable ability to re-establish itself. When a tornado rips through a community, most residents are out immediately surveying the damage and making plans to clear the debris and to rebuild. Some people in this stage begin to systematically re-organize their lives. This matter-of-fact manner may be resented by their spouse who sees these attempts as disrespectful or as lacking feeling. It must be understood, however, that attempts to get things back to normal are done under emotional anesthesia. Friends and family may mistakenly believe that this person is over the crisis when nothing could be further from the truth. The spouse may go back to work, make decisions, see friends or shop. But the bottom suddenly falls out without warning.