Paul has a neurobiological disorder (NBD) and psychiatric illness caused by a brain dysfunction. NBDs currently include major depression, schizophrenia, bipolar disorder and obsessive-compulsive disorder. Although different types of mental illnesses present different challenges, there are similarities in the way these illnesses impact family members and loved ones.
The session unfolded. "You just don't understand, doctor," Paul's father bursted out. "Nobody listens to us, his family. It's not easy dealing with Paul. I hate to say this, but he can be such a burden. My wife and I can't do anything without considering its effect on Paul—and he is 30 years old. Half the time we feel crazy." Tom added, "Paul seems like a stranger to us. It's as though aliens have taken our son and left an impostor."
Almost mindless of the children, Tom and Tina shared the devastation of Paul's illness on their marriage. They were so drained and so angry with each other that they rarely made love, and they seldom went out together. When they did, they argued about Paul. Tom thought that many of Paul's problems were exaggerated and that he was taking advantage of them. Like many mothers, Tina was more protective and accommodating of her son, especially during the early years. These differences led to quarrels in front of the children, which the family dreaded almost as much as Paul's strange and peculiar behavior. Both parents had little compassion left for Paul or each other. Even less time was left for Jim and Emma, because they seemed so normal and caused no problems.
Without warning Jim interrupted, "Not again. Why does Paul get all the attention? I never feel important. You always talk about him." Ignoring her own fears, Emma tried to reassure the family that Paul would be okay. "We've handled Paul's problems before," she pleaded. There were many unspoken feelings, such as the overwhelming responsibility Tom and Tina suffered, the resentment that Emma and Jim felt, as well as the family's guilt, exhaustion and demoralization. And there was a half-wish that Paul would just disappear.
Despite everything, the family loved Paul. They each had powerful—even fierce—loyalties toward him. This was evident when Tom explained: "We brought Paul here, we care what happens, we sit in the waiting room while his life is on the line, and we will take care of Paul when everything is said and done." Paul was important to all of them.
Stopping the Hurt
The family had sought help from other mental health professionals. Paul's parents recounted being blamed for his disorder by several professionals, and they reported feeling confused and helpless. Emma and Jim felt like outcasts; they were ignored by their parents and shunned by their friends. Everyone wanted the hurt to stop. At the very least, the family wanted someone to recognize their pain and say, "This must be very hard for all of you."
The Parkers are not rare or unusual. One in five Americans has a psychiatric disorder at any given time, and half will have one at some point in their lifetime.
More than 100 million Americans have a close family member who suffers from a major mental illness. Of the 10 leading causes of disability, half are psychiatric. By the year 2020, the major cause of disability in the world may be major depression. Further, it has been estimated that only 10 to 20% of those requiring care in the United States receive it in institutions; the rest receive their primary care from the family.
Devoted to their ill member, the family may be the best-kept secret in the arsenal of healing. Yet, family members are considered the support team; they are not known as the stressed and the grieving. These tired mothers and fathers, daughters and sons, husbands and wives deserve attention as well.
Mental illness can weave a web of doubt, confusion and chaos around the family. Unwittingly, the person with mental illness can dominate the entire family through control and fear or helplessness and incapacity. Like a bully, the mental illness bosses the primary sufferer as well as the loved ones. Instability, separation, divorce and abandonment are frequent family outcomes of mental illness.
Under the Influence
I have observed five factors that bind families to the despair of their loved one's illness: stress, trauma, loss, grief and exhaustion. These factors provide a useful framework to understand the underlying structure of the family under the influence.
Stress is at the foundation of the family experience of mental illness. There is constant tension, dread and worry because the illness can strike at any time. It's common for family members "to walk on eggshells." The Parkers liken the atmosphere to a pressure cooker and the possibility of the ill loved one "going off the deep end" looms. Stress accumulates and leads to psychosomatic illness. Tom has high blood pressure, while Tina suffers ulcers.
Trauma also lies at the core of the family's experience. It can erode members' beliefs about control, safety, meaning and their own value. While victims of NBDs rarely assault others physically, they do assault with words, and their words can pull apart the family. Another form of trauma is "witness trauma," where the family watches helplessly as loved ones are tortured by their symptoms. This type of family atmosphere can often induce the development of traumatic symptoms like invasive thoughts, distancing and physical disorders. The result can be traumatic stress or posttraumatic stress disorder. Much of the family's despair results from trying to manage and control what it cannot. Knowing when to intervene is one of most difficult lessons a family must learn.
Loss lies at the very nature of family life. Family members report losses in their personal, social, spiritual and economic lives. They suffer losses in privacy, freedom, security and even dignity. "What we miss most is a normal life," said Mrs. Parker. "We have lost being just an ordinary family." The family may be the only place where we cannot be replaced. So it can be devastating if we cannot have effective family relationships.
Grief occurs from this steady diet of loss. Family members can go through protracted grieving, which often goes undiagnosed or untreated. Grieving centers around what life will not be. "It's as if we are in a funeral that never ends," said Tom. Grieving can become compounded because our culture does not sufficiently acknowledge and legitimize the grief of those under the influence of mental illness. A lack of appropriate entitlement can follow. "I really have no right to feel bad. Paul is the one who is ill," said Tom. Therefore, mourning fails to occur, preventing acceptance and integration of loss.
Exhaustion is the natural result of living in such an atmosphere. The family becomes an endless emotional and monetary resource, and must frequently monitor the concerns, issues and problems of the ill loved one. Worry, preoccupation, anxiety and depression can leave the family drained—emotionally, physically, spiritually, economically. Tina summarized it, "There's no rest." Tom added, "We can't even get a good night's sleep; we lie awake wondering what Paul is doing. This is 24 hours a day, 365 days a year."
Leaving It to Fate
Living in an environment of chronic stress, trauma, loss, grief and fatigue can also lead other family members to their own parallel disorder. Parallel disorders of family members are also known as secondary or vicarious traumatization. The family members can develop symptoms including denial, minimization, enabling, high tolerance for inappropriate behavior, confusion and doubt, guilt and depression, and other physical and emotional problems.
Other terms include learned helplessness, which occurs when family members find that their actions are futile; depression fallout, the consequence of living in close proximity to a loved one's despair; and compassion fatigue, burnout that comes from intimate relationships when family members believe they cannot help their loved one and are unable to disengage from the illness long enough to get restored. "I'm just too tired to care," said Tina.
The symptoms of families under the influence of NBDs can be devastating, but they are also very treatable. Research consistently shows that four elements lead to healing: information, coping skills, support and love.
Healing begins with an accurate diagnosis; from there core issues can be confronted. The family moves beyond their loved one's illness—not away from their loved one.
In response to pain, the family can learn to develop a disciplined approach to dealing with their situations. Tina, for example, has embraced spirituality and has learned to ask herself, "What is the lesson that I am supposed to learn in this very moment?" Tom adds, "When I gave up caring about what was supposed to be, I got back my footing and now have something to offer Paul other than my temper."
To create a new life, the Parkers made five key transitions that facilitated healing. Although not every family member made all of these shifts, most family members made enough of them to change their lives. First, to transform the way they thought and felt, they shifted from denial to awareness. When the reality of the illness was confronted and accepted, healing began. The second transition was a shift in focus from the mentally ill person to attention to self. This shift requires the establishment of healthy boundaries. The third transition was moving from isolation to support. Facing the problems of living with mental illness is too difficult to do alone. Family members worked within a framework of love. This makes it easier to relate to the illness with distance and perspective. The fourth change is family members learning to respond to the person instead of the illness itself.
The fifth and final shift toward healing occurs when members find personal meaning in their situation. This elevates the personal, private and limited stories of the family to a much larger and more heroic level. This shift doesn't change what happened or even take the hurt away, it just makes people feel less alone and more empowered. It creates choices and new possibilities.
Three years after my first encounter with the Parker family, I met with them for the first time in over a year. As they sat in their familiar seats, I reminisced. I remembered the moment the family's denial was broken: when Tina said to her son Paul, "I have your pain and I have my pain—I have both."
When we first met, they were trying to save a past; now they are building a future. The session was punctuated by laughter as the Parkers learned to reduce their expectations to more realistic levels. They also learned to take better care of themselves. Because family members who get help and support demonstrate healthier functioning, Paul has become more responsible for his own recovery.
Change has occurred for many other reasons. Newer medications, for example, have helped Paul significantly. Almost 95% of what we have learned about the brain has occurred since 1990. Initially, family members couldn't talk to one another. Now, they turn to each other and speak openly about their concerns. Tom and Tina have found a new life through their advocacy and support group work. Emma has married. And Jim is studying to be a psychologist and wants to help families.
Healing a family entails discipline. With love and commitment, family members can break the spell of the illness by broadening their sense of meaning. And meaning can be found in such diverse areas as religion, raising children, contributing to charities, forming organizations, developing a 12-step program, writing, running for office, or helping the boy next door who lost his father.
Families like the Parker's are among a growing number of people who are recognizing that they have been impacted by the mental illness of a loved one. They are choosing to acknowledge their plight, grieve their losses, learn new skills and connect with others.
Living under the influence of mental illness calls us to confront the darker as well as deeper sides of life. It can be a terrifying, heart-breaking, lonely and exhausting experience or it can forge the latent, untapped strengths of individuals and families. There is more hope than ever for families. And it is never too late to have a happy family.
Said Tina Parker, "While I don't believe life is a bowl of cherries, it isn't a can of worms anymore either." And Tom adds, "Hardly a day goes by where I am not grateful for my family and being alive. I savor the good days and let the bad ones pass. I have learned to make the most out of every moment."