Behavioral Health: A FAMILY’S PERSPECTIVE
Over 25 years ago mental illness struck our family - for some reason, perhaps genetic factors, perhaps environmental factors, or both. The statistics show that mental illness affects over 58 million Americans each year. So, why our family?
My husband and I had the model child, our only child – bright, energetic, always bubbly and happy. We just knew that she would go far in life; that she was destined to become self-sufficient and productive in her adulthood. However, our tidy little world fell apart when our daughter was 15 years old. She began to exhibit bizarre behaviors, including severe mood swings, was frequently in trouble at school, and got involved with drugs and alcohol. She had developed epilepsy following an accident and we thought that was the cause of her problems. After all, she did feel “different” and that is hard for an adolescent to handle. But it was worse than that. After several psychiatric hospitalizations in her teen years, she was diagnosed with paranoid schizophrenia. It is one of many mental illnesses, certainly the most severe.Our daughter is now 43 years old and still struggles daily with her disease.
I would like to share some factual information about mental illness. First of all, mental illness is a biological brain disorder that is not curable, but is treatable and can be managed. It is a disabling medical condition that disrupts a person’s thinking, feeling, mood, daily functioning, and ability to relate to others and cope with the ordinary demands of life. It is not the result of personal weakness, lack of character or poor upbringing. Many people with mental illness also have addiction problems and, in those cases, both the illness and addiction need to be treated together. A treatment plan is essential for a person with any type of mental illness. In addition to medication, talking with a therapist about living with the disease, getting help with everyday living skills, and participating in self-help support groups are all essential to stabilizing the disease. Unfortunately, social stigma and shame associated with mental illness often prevent people from reaching out for help. Hopefully, ongoing education will help to eradicate this stigma.
Schizophrenia is the most complex and disabling of all the mental illnesses. Contrary to popular belief, schizophrenia isn't split personality or multiple personality. The word "schizophrenia" means "split mind," which actually refers to a disruption of normal emotions and thinking. People with schizophrenia have many bizarre symptoms, including, paranoia, often with the belief that other people are trying to hurt them; hearing voices that torment and ridicule them, voices that other people don’t hear, even hearing people on the radio or television talking directly to them; seeing things other people don’t see; delusional thinking causing the inability to tell what’s real from what is imagined; trouble organizing their thoughts; suffering depression or experiencing phases of mania. Suicidal thoughts and behaviors are also common among people who have schizophrenia, as with other forms of mental illness. To live in the community, people with schizophrenia may need supported housing, work rehabilitation and other community support programs. Those with the most severe forms of this disorder may be too disabled to live alone, requiring group homes or other long-term, structured environments. Unfortunately, there are some people with serious mental illness who do not respond to treatment and do not get well.
As we know first-hand, mental illness devastates families, and our family was no exception. We knew very little about mental illness; we didn’t know how to deal with her psychotic episodes, her self-mutilation, depression and mania. Watching her deteriorate was painful to us. In particular, my husband’s frustration at not being able to “fix the problem” caused him difficulty in accepting her disease. I handled it differently, enabling her to depend on us far too much. However, as time progressed, we learned more about schizophrenia. We also had to learn how to navigate the mental health system – no easy task. The more knowledge we attained, the more we understood what she was up against. Being educated about the illness has enabled us to be more supportive to her in handling her day-to-day challenges and the frequent psychotic breaks and crises that still occur and will occur in the future. Once we had reached a level of acceptance, we could offer her the support she needed, including giving her the ability to become as independent as possible, given her circumstances. Over the years of her illness, she has had many psychiatric hospitalizations and has spent several years living in-group homes. She is now living independently and we are proud of her and the way she has fought an uphill battle with her illness. After every psychotic relapse, she forges ahead with a positive outlook.
In addition to education, a good support system is important for families like ours trying to get through each day, constantly worrying about their loved one’s well-being. We were very fortunate in locating a family support group. Sharing feelings and concerns with others in the same situation was paramount to our own survival.
The National Alliance on Mental Illness (NAMI) is a national organization dedicated to educating and supporting families of those with mental illnesses. We are fortunate here in Highlands County as NAMI has recently started an affiliate in this area. NAMI Highlands County is already offering educational classes and support groups for families, led by trained family members. It also offers educational classes and support groups for those with a mental illness, led by trained individuals who, themselves, are managing their own illnesses with medication and peer support. Additionally, NAMI has just begun a “dual diagnosed” support group for those with both mental illness and addiction. In all these settings, participants learn and gain support from one another. I have been involved with NAMI since my daughter was first diagnosed with schizophrenia and have gained knowledge and support through this organization. I don’t know how I would have survived without it.
If you, a family member, friend or neighbor are experiencing any of the symptoms discussed above, or if you know a family who is trying to cope with a mental illness of their loved one, please seek help. Remember, even though mental illness cannot be cured, it can be managed and, in many cases, treatment does work.
Family to Family Support Team