Schizophrenia -- A Family's Experience

Oct. 10, 2008— -- It was hard to talk about my sister, Rebecca, when I was growing up. She had her first psychotic break as she was packing for college in 1969. She ran up the stairs screaming, "Help! There is something insideme."

My mother ran after her calling, "Rebecca ... Rebecca."

My parents whispered behind closed doors, made a phone call to a psychiatrist, and then took her to the local hospital where she stayed for a week. It was a chaotic time in our house. As I recall, no one knew what had just happened to my sister.

With Mental Illness Awareness Week coming to a close, it's important to remember one in four Americans suffers from a mental health issue and one in 17 has a serious and often life-threatening psychiatric disorder. At any given time, 2.2 million Americans suffer from schizophrenia.

Eventually, Rebecca was diagnosed with a mental disorder -- schizophrenia, and she is ranked at the top 10 percent of the most severely ill.

She sees and hears things that are not real. She has delusions of grandeur. Most people with the severity of her disorder take their own lives.

One day we were driving to a doctor's appointment and she covered her face with her hands and simply said, "I don't know who I am; I don't know where I am."

Most of my life I never wanted to read anything about schizophrenia because it frightened me. I was always reluctant to discuss my sister's illness because of the associated stigma, and I wondered if others would think there might be something wrong with me or my family.

Sadly, I think most families suffer in isolation. Isn't it a shame that there is still a stigma today? It shouldn't be, because everyone is affected in some way by people with mental problems. Although it may not be discussed, we all know a cousin, an aunt, a co-worker, a friend, or even a parent with depression, bipolar disorder, obsessive compulsive disorders and addictions. The severity of these problems varies widely.

Some patients may require only psychotherapy; some may need low doses of medication and therapy. In the most severe cases, patients may require hospitalization.

Perhaps education is the answer. We should think of those suffering with a mental disorder as we do with diabetes or any other medical problem.

I loved my sister, the person underneath the illness, the woman the caregivers often couldn't see. That love kept my mother and me searching for answers.

Eventually, the doctors were able to treat my sister with medication. Combined with the supportive care of an outstanding psychiatric rehabilitation program, the medication enabled my sister to live a more stable and contented life. She lives her life quietly now, and with dignity.

After my mother's death, I became the principal caregiver for Rebecca and as such often became frustrated and discouraged, prone to feelings of despair, resentment and exhaustion. After discovering siblings cope differently with family illnesses and crises, it relieved these negative feelings.

Now, I realize that people like me overfunction in an effort to control the situation and as a result enable others to underperform to their full ability. It is critical that caregivers set boundaries and seek help in order to live happier, more balanced lives.

Understanding this has given me an overwhelming sense of forgiveness and acceptance.

The medical community has made great progress in the treatment of mental disorders through pharmacological breakthroughs and community rehabilitative programs. Many people incorrectly continue to assume that mental disorders are the result of parenting and early childhood stressors. In the past decade, tremendous strides have been made in the area of biological research that supports a physical and chemical, or physiological, cause for the most serious of mental disorders.

Improvements in medications in the past 20 years have enabled a mass exodus from the state psychiatric hospitals, greatly reducing the number of patients who require long-term institutional care. While some state hospitals have campuses the size of universities, the buildings now stand empty.

The public may believe these large unoccupied state hospital facilities demonstrate that the problems of people with mental disorders have been cured or managed. Certainly, the patients have greatly benefited from the improvements and enjoy a higher quality of life because they are blending back into society.

In some cases, the medication alone is not enough to sustain people with moderate-to-severe mental disorders. They need the support of psychiatric rehabilitation that helps them live as independently as possible in the community through job coaching, medication supervision and housing.

People with mental disorders need to be respected and embraced. These disorders could affect any one of us and they don't discriminate based on race or socio-economic status.

How would you want to be treated if you or your loved ones developed a mental disorder?

Let's erase the stigma of ignorance, tear down walls of shame and build bridges of compassion.

Jane Hennessy is the author of the memoir "Rebecca's Rose."