National Alliance on Mental Illness
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Improving the Road to Recovery

By Brendan McLean, NAMI Communications Coordinator

“It’s the most soul-wrenching experience anyone can go through.”

This was how one respondent to NAMI’s survey on first episodes of psychosis described what it felt like to have a loved one experience psychosis. Many other individuals voiced some of the same thoughts: tales of confusion; feelings of isolation; anxiety about what the future would hold.

Questions about what would happen to their or their loved one’s well-being abounded. Can you maintain your current life? Could you still have a job? Would friends abandon you?

More than 1,200 individuals who had experienced psychosis and more than 2,800 family members and other loved ones shared their perspective on their experiences with psychosis in a hope to lessen the difficult road many more will face behind them. The results of the study were published in the October 2011 NAMI report First Episode: Psychosis [PDF].

Psychosis is a frightening event experienced in some cases of mental illness. It is most commonly seen in cases of schizophrenia and bipolar disorder, but it can be observed in other mental illnesses as well.

Herein where lies the heart of the problem. “While mental health service users and families will be able to find plenty of resources and literature on schizophrenia, less in available on the first episode of psychosis, which may or may not evolve into schizophrenia,” said Michael T. Compton, M.D., M.P.H., professor and director of research initiatives department of psychiatry and behavioral sciences at The George Washington University. Dr. Compton is the co-author of the book The First Episode of Psychosis: A Guide for Patients and Their Families.

Because there is a lack of readily available information, individuals are often not sure where to turn. The single greatest response to the survey question of who had been “most helpful” during the experience of the first episode of psychosis was “no one.”

“This is simply unacceptable,” said NAMI Medical Director Ken Duckworth, M.D. “With this new project, however, I am delighted to say that NAMI has begun to address these important and compelling needs.”

With the release of the new site, NAMI now offers an arena devoted to dispersing knowledge based support geared towards first episode of psychosis. Having a wealth of information gathered together in an easily accessible place will prove invaluable, especially to the nearly 50 percent of survey participants who stated the Internet was an important source of information to them. This website is a valuable addition to the emotional support already offered through many of their classes such as NAMI Family-to-Family and NAMI Peer-to-Peer.

Including information on topics such as diagnosis, symptomology and treatments, the new site will attempt to fill a hole that has been left open for far too long.

“Most research literature on psychosis has been conducted on individuals who are well beyond their first episode. However, the first episode is a critical period, not only for researchers to learn more about the earliest phase of psychotic disorders, but also for affected individuals and their families to begin treatment in a timely and robust manner,” added Dr. Compton.

Individuals experiencing psychosis often begin to lose contact with reality because of hallucinations or delusions. Psychosis, however, does not usually manifest itself in fully developed hallucinations overnight. There are usually small signs that begin to exhibit themselves prior such as a decline in academic performance, a decline in self-care or personal hygiene, a suspiciousness or uneasiness with others, an increased sensitivity to sights or sounds or hearing voices.

Addressing these symptoms at their earliest moments and beginning treatment early is paramount in providing the most successful treatments and methods of support. As there is an accretion in symptoms, behavior worsens and treatment is often less effective.

“Don’t delay,” said Dr. Compton. “Find a psychiatrist experienced in psychosis and work closely with him or her through the initial evaluation and treatment planning. Work together as a family.”

The last part is often the most difficult. Those affected by a first episode of psychosis may tend to isolate themselves. However, staying connected to family, friends and mental health professionals is very important.

Added one individual who had personally experienced psychosis, “You cannot do it alone—period. Some sort of support is vital.”

Additionally, although the report found that 40 percent of individuals who experienced psychosis said they spotted their symptoms on their own, over half of family and friends who responded to the survey opined that they witnessed them first. This discrepancy points to the need of having a good supportive community to not only help identify trouble but ensure treatment is followed.

“We have many effective treatments now, including both medications and psychosocial interventions, which are usually combined for maximal effectiveness,” Dr. Compton said. “But these treatments can only be effective if those affected embrace them and work closely with mental health professionals who have expertise in psychosis.”

In the Web resources of the newly launched site, Dr. Duckworth reviews recent research from around the world on medications, methods of therapy and creative models of care and service delivery. An analysis of the most current methods used can be extremely beneficial in helping an individual gain a greater understanding of what help is out there and what might be the most effective.

“The topic of psychosis is being looked at from every angle and the information may help to inform [an individual] about what is right as [he or she] face this challenge,” said Dr. Duckworth.

Developing effective coping strategies is one of the most vital aspects of the recovery process. Simple things such positive thinking and talking by family members can help exponentially in recovery. Practicing relaxation, maintaining good health habits and relying on family, friends and other social supports, such as spiritual organizations and mental health professionals are all valuable as well.

Even with effective coping techniques, recovery will neither be quick nor will it be easy. A mother of a child who had experienced psychosis may have said it best, “Be prepared for the long winding road ahead, but be grateful for every day that you have your loved one near you because that means you can watch them recover.”