Stories related to psychosis can be intense, and can lead to traumatic recall when a sufferer retells them and does not feel contained or believed within the relationship. Perhaps this is the reason many therapists, family members, and psychiatric wards learn to shut down the telling of the story.
Shutting down stories can be seen as protecting the psychosis survivor from unnecessarily reliving the experience and going through the distress again. Perhaps this is done to avoid a fight or yet another power struggle over reality. Activating trauma that you cannot stand to consider is a bad idea, right?
Imagine being a person who has experienced psychosis and having the entire mental health system agree not to let you tell your story as a boundary. This strategy is employed over and over again despite the fact that recipients of this kind of care often become progressively more isolated and distressed over time.
Perhaps no one in the system can imagine what it is like to experience systemic indifference to traumatic material. Indeed, is it really so impossible to believe that these experiences are real and there for a purpose? Is it really so hard to believe that the person in psychosis may have some perceptions that are spot-on accurate? Not acknowledging them can be cause for further social withdrawal, instill a sense of hopelessness, and do further damage to an already ailing self-esteem.
Trying to stay on the same page as everybody else may teach a person to suppress their experiences. While symptom suppression may decrease social attacks and ridicule, I also believe it is the wrong tact for many. Too many people suppress, isolate and withdraw from social functioning. Is it not possible to create spaces and relationships in which experiences of psychosis can be dealt with in mindful manners? If survivors can be believed by supporters, if their experiences can be credited with having profound meaning, then perhaps outcomes could be better.
A New Strategy with Survivor-Led Groups
I have come to strongly believe that shutting down stories related to psychosis is the wrong thing to do. I believe this so strongly that I have come out as a therapist with lived experience with madness. I regularly share my experiences in group therapy to facilitate group reflection and the telling of stories.
I credit the Hearing Voices Network for prompting me to take this plunge. Word of survivor-led groups achieving remarkably different results prompted me to start a curriculum for professional groups. In the curriculum, which I have turned into a training and a group therapy guide, I deconstruct what psychosis is into solvable components.
It’s true that there are times when I wonder if coming out mad was the best career decision. I have had to bravely admit my vulnerabilities, which sometimes seems to hurt my credibility. And yet I find that being an artfully unreliable narrator helps guide people to their own truth more effectively. I feel I get better results having taken the plunge.
Being out has helped me exponentially in creating specialized care for psychosis survivors. As a result, I have a number of suggestions for how to encourage the telling of stories without retraumatizing survivors in group settings and in individual encounters. Many of these suggestions are based on replicating realities that happen in survivor-led groups.
1. Eradicating Stigma and Grounding Participants
Many supporters actually believe that people who experience psychosis are fragile. It is one of the three most dominant stigmas about mental health challenges, according to Patrick Corrigan’s research.1 As a professional, I have heard this said so many times and I am convinced that my colleagues say this because they don’t know what “psychosis” feels like. At times, simply reversing this stigma can help ground someone who is in psychosis and remind them about how tough they are to be handling such real trauma.
There are other grounding techniques that I have utilized when I sense the group is starting to feel traumatized. Often, acknowledging the trauma in the room and allowing the groups to socialize and focus on related movies, music, or art can help. If group members initiate this process, it is good to compliment and acknowledge what they are doing as being helpful. Instead of controlling the group and staying on course, collaborating and enhancing these efforts is advisable.
2. Believing that Psychosis is Happening for a Reason and Holds Truths
I already said this, but it stands to be further emphasized.
I believe that if classifying experiences that trigger psychosis as an ‘illness’ can retraumatize many, finding value in those experiences will help ground many psychosis survivors who are in distress. In other words, when the helper meets the content of the survivor’s experience with curiosity and interest, the psychosis survivor is less likely to be traumatized. In contrast, if the supporter exudes the belief that the psychosis survivor will be traumatized, this outcome will be more likely to come true.
Often the survivor leader is excited to learn that others relate to them, and has a high level of hope that others can achieve wellness in spite of disturbing material. Thus, getting naturally excited when a person is sharing details and having strong beliefs about recovery being possible helps deepen the threshold for what others can bear.
Additionally, studying different causation frameworks that psychosis survivors hold gives participants a basis for understanding how experiences that trigger psychosis are possible.
In therapy groups I have often suggested there are six styles of causation frameworks that operate in different ways at different times. Sometimes the experiences may be caused by or related to political, psychological, traumatic, scientific, spiritual or artistic factors.
Knowing which framework explains a given trigger is often impossible! However, I believe that the more types of frameworks the psychosis survivor uses to explain the triggers, the more likely that they will be able to navigate the trigger in a functional manner. Positive knowledge about all explanations helps one find the value of each experience.
The more explanations the supporter learns, the better they can help make valuable meaning of these disturbing experiences. Giving up and calling the experiences meaningless does not help.
When there is a purpose for suffering, it is far more helpful.
3. Sharing Your Own Experiences with Psychosis
One of the huge benefits of survivor-led groups is that the leader also shares their own experience with psychosis. This opens people up to telling their story because it defies the dysfunctional boundary that exists between clinicians and patients—the presumption that the clinician is ‘well’ and the patient needs to learn wellness from them because they know better.
Additionally, when a survivor leads the group and discloses their own experience it sets the stage for more sharing.
One reason I believe this works is that if group members are free to judge the leader as being delusional, they get the chance to do some projective identification testing. If they do judge the leader as being delusional and see that it doesn’t bother the leader, they will become more emboldened to take the same risks and withstand others who may try to reality-check them.
Another reason self-disclosure in survivor-led groups works is because many in the group will believe the leader’s story and support them, as that is the way they want to be treated if they tell of their own experiences. Therefore, a leader who is prepared to believe some pretty outrageous stuff in a reciprocal manner is generally appreciated by many in the group.
Whatever place the group participant may be in, the tendency is to become compelled to share. I believe that sharing breaks down defenses and helps the participant let go of the traumatically reinforced material.
4. Spotting and Sharing Related Experiences to Achieve Cultural Competence
Many workers in the mental health system might say they can’t share their experiences with psychosis because they haven’t had them. Though I agree that it can be harder to relate to psychosis material if you haven’t had those experiences of being in a crisis, I think most workers likely have had some related experiences; if they learned to identify these and articulate them it would be helpful for psychosis survivors.
If a mental health worker sits in group and understands the experiences that trigger psychosis, they will probably learn to be able to relate. Additionally, being able to relate normalizes psychosis experiences and makes it safer to disclose without feeling like others don’t believe you and don’t care. In the definition of psychosis that I have created, things like dreams, interpersonal interactions, and intuitions can trigger alternative realities. I think workers can learn to relate using those common experiences and learn to join the conversation.
I think this is a measure of cultural competence. If you can see serendipitous events and imagine thoughts that may come up from them, why not share those with the psychosis survivor? Why not think about how you might explain those experiences in creative manners? Doing so isn’t going to hurt you. It is a sign of wellness and empathy.
5. Knowing When the Story Is Really There to Test You
It is important to know when a psychosis survivor is simply trying to establish her or his right to tell the story. In the past, survivors may have been interrupted or challenged when they tried to tell their story. Some will tell fragmented stories to see if they can get away with it and keep your interest and concern. I have been known to get in there and fish for special message experiences to demonstrate that I am there with them. However, it can be important to notice when this isn’t wanted and just let the person tell their story without being judged for doing so.
In many cases, the traumatic response may happen when the test has failed yet again. Indeed, I think it is important not to be concerned about whether the psychosis survivor’s comments are accurate or fit into your reality. Perhaps it is possible for the leader to make a few inaccurate-sounding comments themselves. This helps normalize and permit those experiences and paradoxically challenges the psychosis survivor to question themselves.
This is not to say that there is not a time to challenge an inaccurate comment that is made about you; there is a point where this can be effective. But first you have to repeatedly pass the tests. And acknowledging that you don’t understand everything about yourself and that they may be seeing something you are not aware of can help put off the challenge until the test is passed.
6. Bringing Other People or Situations Into the Discussion
If I am afraid that a person is going to get triggered by sharing their psychosis story because the group is inattentive or emotionally absent, I may try interrupting and identifying a triggering experience the participant has referenced and ask other group members if they can relate to the experience. If I am not in group, I may think of a similar experience I have heard before and share that experience to prove that the person is not alone. Usually, at least, I can relate to the triggering experience and share a story. This not only prevents the participant from feeling quite so alienated, it reminds them that others can relate and deepens the support in the room.
Likewise, if I am able to listen and discern some conspiracy ideas that might explain some of the triggering experiences and I fear retraumatization, I may propose that the group talk about that particular brand of conspiracy and how it really is possible. Again, this may help the participant feel like they are not alone. Group conspiracy talk is another way to deepen the threshold of what the group can tolerate and invite stories.
With other people relating and participating, the person telling the story is less likely to be retraumatized and may feel more supported. Then, it is a great idea to return to the story and hear it out intensely without having need for reality tests.
7. Addressing the Fact That You May Be Recording What Is Said
In many countries where the Hearing Voices Network has flourished, such as England, the Netherlands, and New Zealand, socialized medicine enables support groups to be funded outside the system where there is no need for clinical notes. This also helps create a sense of safety that invites disclosure.
Indeed, if group records are going to be taken by the facilitator for reimbursement purposes, that needs to be addressed in the room, identifying the potential for conspiracy.
Letting the participants know what I believe about the notes and the potential for them to be used in an abusive manner without my knowledge is a strategy I often employ. I point to computer screens and light fixtures and suggest that if they can put cameras down peoples’ colons, they can certainly bug the room without my ability to protect the group participants. I believe it is a disservice to promise a psychosis survivor that their material is safe. We are not in control of their ideas of reference that may be confirming unsafe realities. At least when the helper acknowledges the limits of their power it validates the concern.
When I document what takes place in a group, I also note that I have used my own lived experience to crack open stories. I tell participants that I do that. I think doing so demonstrates integrity and clarifies that the note is not written with the intent to do them harm. I also think doing so reduces stigma of the chart reviewers and takes away the perception that the helper will turn on the group participant and abuse power.
It is ideal when these issues can be avoided, but I also think it is possible to address them if you have to take notes in order to bill in the health care system.
Specialized Care Is Necessary
I believe that utilizing these strategies and other well-documented efforts of the hearing voices movement can help clinicians grow and come to a point where they can listen to stories of psychosis and contain them just like survivors can. I think that people who choose to specialize in this type of care need opportunities to grow and learn to contain such stories, and that survivors need opportunities to become specialists and lead groups themselves. Specialized care is most certainly needed.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.