By Leah Rokeach LCSW
"You are no good. You are a failure. You won't achieve anything good in your life. You might as well be dead." These are the voices that Jay, who is 38 years old, has been hearing since he was 22 years old. Jay lives at home with his single mom. He started to hear voices after he was let go from his job as a messenger
When he started to hear voices, he became very frightened and did not tell anyone. He isolated himself in his room and refused to leave. When his mother heard him scream "Leave me alone," she became frightened and dialed 911. Jay was taken to the hospital and admitted to the psychiatric ward. The hospital psychiatrist diagnosed him with schizophrenia and prescribed medications. This was devastating to both Jay and his mother. After six weeks, Jay was discharged.
For a number of years after this first hospitalization, Jay struggled with his voices. The medications he was taking didn’t eliminate them, and he continued to experience distress from what he heard. He kept switching therapists and psychiatrists and had many hospitalizations. He tried to work but could not be around others; he believed they, too, could hear his voices and, at times, felt they were talking negatively about him. He would scream accusations and eventually reverted to spending much of his time alone in his house. His mother tried to get him to attend day programs, but Jay could not tolerate the stimulation of so many people. He was hospitalized many times, especially when his voices commanded that he should hurt himself.
Jay's mother started to attend family support groups where she learned about the Hearing Voices Network (HVN). She became curious and did a lot of research. She was drawn to the HVN philosophy, which suggests that hearing voices is a human variation, much like being left handed. According to the HVN tenets, it is only when people don't know how to handle the experience that assistance is needed. Rather than looking at hearing voices as a disease requiring eradication and a "cure," it is more helpful to look at voice hearing as significant, decipherable, and intimately entwined in a person's life story. "Coping" is a crucial component of the HVN: understanding, accepting, and integrating their emotional meaning is deemed a recovery response. In their philosophy, voices are characterized as messengers that communicate compelling information about genuine problems in the person's life. Supporting individuals in listening to their voices without anguish seems to be an authentic long term solution for in order to recover from distress, the person must learn to cope both with their voices and the original problems at the heart of their experience. The HVN stance has moved many people over the years and has led to the formation of Hearing Voices groups around the world.
These explanations made a lot of sense to Jay's mother and for the first time she became hopeful about his future. She shared all the information with Jay and encouraged him to do his own research about the HVN on the internet. At first, Jay was skeptical and did not believe all that he read. His mother was able to find a group located an hour away from their home and accessible by public transportation. They were referred to a therapist experienced in working with people diagnosed with psychosis. Jay perceived the word "psychosis" (rather than schizophrenia) as less stigmatizing and more hopeful. Starting therapy with this experienced licensed clinician was a first crucial step in his recovery. In therapy, he eventually realized his voices were connected to the emotional and physical abuse perpetrated by his father, the sexual abuse by one of his teachers, and the guilt Jay experienced after father's death. The therapist was familiar with the HVN and the benefits of attending a hearing voices group. She encouraged Jay to try the group. With much coaxing, he finally started attending the hearing voices group when he was 35 years old.
After a few months of attending the Hearing Voices Group, there was a positive change in Jay. He became more optimistic about his future, socialized more, and he and his mother developed a nice relationship, less fraught with friction and fear. His growth and healing continued as he attended the group. Although there were setbacks, he was able to get the help without entering inpatient treatment. At the present time, he is the co-facilitator of the group, copes well with his voices, is in therapy, and maintains a low dose of medication. Most importantly, he has not been hospitalized for the past three years.
How was this group helpful for Jay? When Jay was asked this question, he answered that he "didn't feel alone" but rather he "felt accepted by others." He was not told that that he was "crazy." He appreciated being told that his "voices are real and the voices by themselves are not the problem, only the relationship to the voices is the problem." This gave Jay the impetus to continue attending the group and confidence that he could move toward healing and recovery.
How Can Groups Be Helpful?
A Voice Hearing group provides a safe-haven where people feel accepted and comfortable. Because voice hearing can be a lonely, isolating experience, providing a safe space where feelings can be discussed freely and without censure often proves hugely empowering. As stated by Peter Bullimore, a trainer in the Hearing Voices Network "Self Help groups are meetings where voice-hearers can get together without having to put on a mask and speak to others who have been there. Self-help groups should not be viewed as therapy groups, but as a place where they can receive encouragement, reassurance, support, and a listening ear."
Sandra Escher, one of the founders of the Hearing Voices Network, in interviewing voice hearers who participated in a Hearing Voices group summarized the following findings:
1) Engaging with the experience can help identify patterns (e.g. linking negative feelings to a negative voice).
2) Discussions can stimulate acceptance of the voice hearing experience and help cultivate a healthy identity as someone who hears voices.
3) By recognizing and exploring possible meanings, individuals may begin negotiating and improving their relationship with their voices.
4) It can be affirming and validating for individuals to recognize their own situations in the experience of others.
5) Whereas avoidance can evoke feelings of powerlessness and anxiety, talking with others who have similar experiences, can reduce isolation and fear.
Results from a study by the English HVN in 2005, showed that there are many reasons why these groups can be helpful. The studies show the importance of being accepted and supported and these groups accomplish just that. They provide opportunities to exchange experiences about coping while also teaching how to talk to voices and not to listen to unhelpful commands. Overall, these groups were found to lead attendees to become more active and involved in the community, establish friendships, take courses, and pursue work/school opportunities.
It becomes clear that many people can be helped in the direction of healing and recovery through hearing voices groups. The increasing volume and variety of hearing voices groups developing around the world points to their efficacy.
Jay's story, and those of so many others, genuinely suggest hearing voices groups offer an approach that can lead to true healing and recovery from the most profound effects of psychosis.
Leah Rokeach has a private practice in Brooklyn. She specializes in working with people who have all sorts of problems that get diagnosed as schizophrenia, schizoaffective disorder, bipolar disorder and other psychotic disorders She also works with families around theses issue. She facilitates two hearing voices groups, one group for men, which she has facilitated for the past 5years, and a new group for women. Leah provides training and consultation for CBTp She completed the EMDR part 1 and part 2 training. She uses EMDR for psychosis and for adults presenting with trauma. She can be reached at 917-670-7148 or leahrokeach@gmail.com