Finding your way in New York City as a young girl growing up with a mother suffering from paranoid schizophrenia can be quite troubling, especially if you are also dealing with poverty and homelessness.
Now, decades later, I realize that the pain and loss that accompany mental illness go beyond anything anyone who has not experienced a mental breakdown can appreciate. To make the situation more desperate, institutions for the mentally ill have all but disappeared. Now in many cases the best someone who is seriously disabled because their mind has become a frightening and unfamiliar landscape can hope for is to be thrown in jail or left to scavenge on the streets.
The stigma of mental illness is one of the many factors that make it so hard to treat. If you can't walk, there are many services available. If you have diabetes, friends and family are ready to help. But if you have mental illness, resources are limited. People are frightened by it and ashamed to talk about it, while those who seek help may be ostracized and labeled as "crazy."
At 16 years old I first started to understand that our erratic life and my mother's episodic delusions and fears were a symptom of her mental illness. My mother was attractive and smart. She loved poetry and theater, pretty dresses. But when she was in the throes of a psychotic episode, she would become terrified and completely dysfunctional. Our lives would be thrown into chaos. Had there been more understanding and compassion, and more services available, it is likely that she would have had a happier and more productive life. This waste of human life and productivity is an incalculable loss for all of society.
When my son, in the prime of his life at age 23, became ill with the genetic burden of my mother's schizophrenia, I thought it might kill me. To see this handsome young man thin and pale, pulling his hair out in an attempt to still the frightening voices in his head, was almost more than I could bear. It has been a difficult and painful journey. I've provided him with as much stability and help as I could manage. Now, at 38 years of age, he is on medication and somewhat stable, but rarely leaves his room and is often terrorized by his voices. As was the case with my mother, I believe that if severe mental illness had less of a stigma, and was viewed with more understanding and compassion, and if more comprehensive services were available to all, Shannon would be able to have a happier and more productive life as the sweet, smart young man he was before his illness-and still is in his brief moments of clarity.
As I look around me, I see similar scenarios being played out in all walks of life. Often the family is devastated but they don't know what to do. All too often there is very little help available. Many are frightened or even disgusted by the strange behaviors they do not understand. I advocate for open discussion, education, and treating this tragic illness as aggressively and compassionately as one would treat any other illness, such as cancer or a stroke.
The burden of pain and disability from mental illness continues to take an immeasurable toll across this country. We urgently need to share our stories. We need to know that we are not alone. We need to understand that those whom we dearly love but can no longer recognize because their minds have become bewildering places can be helped. Our mother, son, partner, friend is still in there waiting to be rescued and liberated.
Nurses in many settings-emergency, psych, med-surg-will have times when they are caring for someone with severe mental illness. An understanding of and compassion for the pain and the impact that mental illness has on patients and their families will assist nurses in giving the positive and supportive care that is at the very core of nursing and that fosters positive outcomes. In addition, concerned nurses can advocate for a system that is better able to limit the disability and heartache of those affected by mental illness.