Shedding the Limits of “Severe Mental Illness” Labels

Would you label someone who decided to dramatically change their hairstyle labile or psychotic? How about someone who shaves their head? Such questions may seem silly, but in the eyes of some mental health professionals such insignificant events may appear to be symptoms of a diagnosable “condition.” Clinicians are trained to search for abnormalities—pathologies—to explain suffering, and often they can label things as abnormal when they are not.  But in reading into a person’s behavior and attaching a label to it, are we helping or hurting them? Does it solve the problems in a person’s life, or does it confine them in a mental box from which they can’t escape? Might not it be better to see the act of cutting one’s hair not as a sign of something wrong but exactly what it is: a decision without any particular symbolism, simply a moment on the journey of life? Wouldn’t it make more sense to step back and observe and support the journey itself?

Adversarial “Treatment”

This focus on individual pathology has a long history in the annals of mental health treatment. We at the Now I See a Person Institute (NISAPI) believe such conventional approaches often fail because they are adversarial: They set up a struggle between the “identified patient” and the persons and systems “treating” them. According to most of our clients and their families, the first salvo is launched when they receive a diagnosis: They are labeled ill, and treatment is framed as a battle against this illness.  Here, the person becomes their diagnosis—in effect, both the victim and the enemy. Often, they are coerced into therapy in the first place, and because clinicians typically work “by the book” (according to treatment manuals with rules and algorithms), their “caregivers” appear more like jailers. Such clinicians monitor and admonish “wrong” thoughts and focus on the outcomes they want rather than what the client wants. After all, this is considered good practice.

For these clients, the battle is a fight to preserve their previous self-identity in the face of being told they have an incurable disease and will have to adjust to a life of limitations, hospitalizations, and medications. It is painful to hear their stories of the warlike events that led them to seek help in the first place, only to find that their search for wellness led to what they describe as forceful relationships with the appearance of therapy. This process attacks not only their self-identities but also their relationships with family members, friends, and even employers. Often, receiving a new identity of deficiency means they will no longer be heard: Because they have certain “symptoms” and are “sick,” their perspectives are now devalued significantly. They are The Other.

One of my mentors, psychologist Harry Goolishian—a pioneer in postmodern collaborative therapy—suggested that diagnoses can explain neither mental processes nor a person, and consequences arise when we think that they do. This element of “treatment,” based on a label from observed or stated symptoms, isolates the client from and within their families, who begin to doubt them even as they start to doubt themselves, often leading to suicidal feelings— or worse.

How Did This Happen?

This wasn’t always the case, particularly among marriage and family therapists who from the beginning strongly believed that problems do not originate inside a person. Our field initially brought a unique perspective, viewing mental illness or health in the context of larger relational systems. We saw the entire family unit, and other relational systems, as important contributors to why people have “symptoms” in the first place. More importantly, we asked how these relational communities can be a source of support and aid in the dissolution of those symptoms. The “identified patient” didn’t have discrete pathology but was seen as part of those larger systems that, unintentionally, created pathology. Thus, we believed “You can’t heal a person without involving the entire system.” However, there was now a blame-and-shame component affixed upon the family. In essence, one pathology replaced another.

Such relational theories evolved into a postmodern revolution, steering us away from the idea of blaming and “fixing” pathology toward changing our use of language and our relationships so new narratives could be born. Change could occur in many directions when disabling labels were removed, environments adjusted, and relationships healed. A fresh breath of hope could emerge in a collaborative search not for what was wrong but for what could be made right. We made conversational space for the novel, the “not yet said.” For some of us, these decades held joy in walking with people, participating in and with-nessing their transformation from a collection of labels and symptoms to a person. A person who no longer feared themselves nor their families and ultimately viewed themselves as emotionally whole—what we refer to as Extraordinarily Normal.

And yet, over the past 40 or 50 years, this relational view of suffering and healing has been overshadowed by the individualized medical model and a new resurgence of focusing on “what is wrong” with someone rather than “what happened” to them. Marriage and family therapists again began treating people as individuals damaged by disease instead of as parts of a bigger whole needing help, to be heard and supported as people in the context of relationships.

There was even a point at which therapists encouraged clients to sever important connections — to disown their “toxic” family completely by writing a letter to their parents. It was the opinion of these well-meaning therapists, educated in cutting-edge theories, that the lives of the people already isolated by their pain would be better off without these relationships. I recall that individuals who had participated in this type of treatment were often suicidal afterward. What was deemed a “best practice” at the time had unintentionally destroyed a family and the lives within it.

With this trend, an understanding of how relationships engender “symptoms,” along with the dialogue of hope and healing for the majority, became lost. Pediatricians, primary care physicians, school personnel, family lawyers, and ancillary services in turn began following the “modern” medicalized procedure of seeking out pathology and treating it. We saw a resurgence of medication, hospitalization, and/or long-term therapy (for those whose symptoms persisted or whose trauma did not adequately explain the severity of their symptoms).

Toward a Collaborative, Human Approach

When people seeking help are automatically seen through a lens of pathology, deficiency, and blame (of their thoughts, feelings, behaviors, and/or genes), they are relegated to the status of “Other.” How can they then be expected to form a “therapeutic alliance” with a professional who views them and their experiences as alien and suspect? How can they be truthful, and how can they not be frightened? Whom can they trust when they already trust no one, even themselves?  Without input and collaboration, their therapy may devolve into coercion and oppression.

People who suffer regularly share with us how seeking services to alleviate their pain led them to different forms of therapy they neither understood nor agreed with, typically including medications and hospitalizations that they felt were moreyes more, traumatic than their original suffering and symptoms. We at NISAPI work with many such clients and their families, and I’ve pondered how they are able to eventually transcend so much pain. I believe it may be due not only to our philosophy and environment but also to the fact that they no longer feel abused and like they are fighting for their lives. As mentioned earlier, clients have and continue to describe their previous treatment journeys as “warlike,” a metaphor they tell us no longer applies when we first embrace the Other.

We believe all clients can and should heal from their symptoms or diagnoses and have found that authentically embracing clients as honored guests— human beings who are suffering and in need of services that address their urgencies —leads to relationships and conversations that produce sustainable change. These dialogues are not manualized techniques; they are spontaneous and genuine, directed by the client and their desires. Together we also consider the desires of their communities—even the ones they do not feel aligned with (relatives, referral systems, judicial systems).

These collaborative dialogical practices are based on listening with no agenda but to aid healing. Collectively we talk of change and how it can occur. We are client-led, honoring client narratives and self-directed goals. Hope is inherent and ever-present when illness narratives about broken brains are absent. In being with people during extremely difficult times, we do not see weakness or brokenness but heroes and heroines whose tenacity and strength we celebrate.

An important part of this process is being transparent with clients. By this we mean reacting sincerely and spontaneously to what they share, listening without judgment as their partner and support system—including being open about what we do not know—rather than playing the role of the all-knowing therapist. Being transparent allows people to blossom and shed their labels. We witness a personal reframing, as a client recently called it, and with the shedding of illness narratives life now appears hope-filled and just. Our job as therapists is to carry the faith for clients because we trust in them and their process, believing that something good will always come out of our engagement with the Other when they develop novel and fresh narratives about themselves.

When we talk to clients who are at the end of their rope and just want to die, how do we keep them holding on—especially a young person with less life experience and control over their world? In collaborative dialogues, little by little we start to talk about things that are not problem-based, but life-based. We need to get to know each other. No matter who we are, sometimes the people around us are not supportive, even though they’re people we love. And we get stuck in the trap of our surroundings and ensuing difficulties, unable to climb out of the mire and muck. So, our “delusions,” substance misuse, self-harm, withdrawal, or whatever situation we’re in seem like a solution. What we need are people who care and have time to listen. This is the antithesis of trying to control “the identified patient.”

As collaborative dialogical therapists and social constructionists who believe we create our reality, nothing is ever planned or thought out before the session. We don’t have an idea of what we will say or talk about except how not to do further harm. We are using the tools we have in our hearts and our heads to come up with ideas on how we can alleviate our clients’ collective pain. We are formed and informed by this Other’s reality.  Here, therapy is like sitting at a big table with a box of puzzle pieces, where therapist and client work in the moment to fit the pieces together to complete the puzzle. Pretty soon, you can both see the outlines of a picture and the direction in which the new narrative is going, empowering the client with renewed self-agency. As a person and not a label.

But when therapy begins not with a landscape yet to be discovered but with a pre-existing image based on symptoms and labels, it takes the client’s personhood away. When we focus on these symptoms and labels, the person’s life and its meaning get erased from the canvas. For too long, we have allowed others— psychologists, psychiatrists, therapists, social workers, judges—to paint a picture of people that is based on a small glimpse of their lives. And we’re allowing these “experts” to reduce people to their “symptoms.” There is no logic to that process.

When someone comes to the table with trauma, suffering or in an extreme state, it is so important to be with that person, to listen with a mind devoid of pre-existing ideas on what they should or should not do. Only with support and unwavering caring, along with an attempt to understand the Other’s suffering and a commitment to epistemic justice, do people change and blossom.

 Case Studies

As mentioned, many of our clients have told us that while receiving contemporary mainstream mental health treatment, it is a war simply to be seen and treated as a person. The following case examples honor the experiences of people who identify as victims of coercion, oppression, and acts that they described as violent and also celebrate the positive outcomes we have achieved in literally and figuratively walking side by side with them on a healing journey. Their names have been changed to protect their privacy.

 Kelly

Kelly was referred by a colleague after three consecutive back-to-back hospitalizations and significant symptoms of “psychosis” such as hallucinations and delusions of grandeur.  She stated that clinicians explained her rapid reoccurrences by accusing her of not taking her medicine. The hospitalizations left her and her family extremely traumatized. Her mother recalled being shocked at seeing Kelly being taken away in restraints by ambulance and then placed in a locked holding cell in one of a hospital’s emergency rooms. She was prescribed antipsychotic medications and therapy with a clinician she was frightened of and who would not speak with her mother.

After these unsuccessful inpatient admissions, Kelly’s mother decided she would not hospitalize her daughter again and would instead care for her by herself. Kelly and her mom were told Kelly was schizophrenic and warned that she “would never be cured, would need medicine for the rest of her life, and would have to learn to live with her disability.” The clinicians also advised her mother that she would need to place Kelly into conservatorship (guardianship) because she was not responding to medications, hospitalizations, or therapy and therefore was incapable of running her own affairs. Kelly’s mother duly administered the prescribed medications, which only heightened her daughter’s fears and did not reduce her “delusions.” She felt hopeless and distraught at seeing Kelly suffering and felt powerless to take care of her. She left her job to search for alternatives.

She and Kelly came to the Now I See A Person Institute in March 2022 and were met with a very different experience: a team of therapists who talked with them. They appreciated the presence of our horses and the natural setting but what Kelly really wanted was people to talk to who would understand her beliefs and ideas, which others had called delusions. She came to the ranch two to three days a week and we spoke with her mom most days at any hour we were needed.  Despite conversations that initially made little sense to her mother, we were able to discuss many themes and, through this process, learned of Kelly’s history of suffering— starting in middle school and ending in a horrifying event prior to her display of symptoms.

What we believe we did to help Kelly, her mother, and the rest of her family (with whom we met occasionally), was to engage in client-driven, authentic, and caring conversations. We call this relational engagement process ethics. We did not talk about schizophrenia or learning skill sets. Instead, Kelly experienced a team of therapists who cared about what she and her mother wanted to talk about and who had the time to listen. Within these collaborative conversations, she came to no longer believe she was “a schizophrenic” and does not fear becoming one.

As time passed and Kelly felt more confident she would be okay, our conversations became increasingly fluid, eloquent, and philosophical. Words of fear and regret were replaced by words of confidence, hope, freedom, and happiness. She views the challenges and “symptoms” she once had as part of a process of letting go of previous traumas.

Since June of this year, Kelly has been completely symptom-free and recently started college. She has learned to drive and has been employed, although she decided she wants to devote her time to school. She is also off all psychoactive medicine. Kelly remarked that the psychiatrist who titrated her off the anti-psychotic drug she was on had shared that she was “sad” Kelly was “schizophrenic.” Kelly was initially frightened by such words, since she had not heard them since beginning sessions with our team.

Kelly told us what she found most helpful: having an environment where she could feel safe and respected despite her symptoms and our belief that the state she was in was a transitional time and not a chronic disease.  She said this hope for change and a future that she could define was important in overcoming her initial fears that she would not recover. She further stated that the relationship with her therapeutic team, focused on non-judgment and care, gave her the courage to surpass her former self and transform because she knew she was not alone in her journey.

Nancy

Nancy, a teen, was referred to us by colleagues last year due to self-harm associated with “psychosis” and “multiple personality/dissociative disorder.” She had been hospitalized several times before coming to NISAPI. Nancy had experienced significant trauma but was also part of a family in which several members had been diagnosed with schizophrenia. Several clinicians had told her and her parents that she, too, suffered from this “severe mental illness.” She came to us feeling hopeless that she could escape the implications of this diagnosis and predicted she would kill herself before her symptoms worsened. Her parents didn’t know how to help; by that point, they feared mental health service providers because these professionals had previously reported them to Child Protective Services.

During this scary time, Nancy and her parents (who lived nearly three hours away from the ranch) would visit us three days a week. We spent many hours following the conversations wherever they led. Her father, for example, had grown up on a ranch and loved to sit drinking coffee and chatting about world affairs. Conversations need to address novel topics like this to facilitate lifelong change. Nancy, like Kelly, talked about what was important to her (not what we may have thought or assumed was important to her). Because her past narratives had been about suicide, we were careful to ensure that she was safe with her parents. In time, as with the majority of our clients, her desire to harm herself dissipated because she was not alone in her thoughts and she stopped seeing her life as hopeless.

After a few months of working with us, Nancy started in-person high school close to her home. At first, she was worried she would not make friends. She proved herself wrong and has a social life that she had never thought possible. She no longer exhibits any suicidal ideation or self-harm and told us she does not see herself as a label or as having any mental illness. She has hope and direction (probably more direction than I did at her age)! Nancy has decided she will not be returning to the ranch unless she is off school. We now offer her telehealth, but she is often too busy to connect!

Cindy

Cindy and her family came to us after several incidents in which Child Protective Services had removed her from her home due to suicidal ideation and the fact that her parents did not wish to medicate her. Because of their refusal, they were deemed negligent. She was placed into foster care and also experienced forced hospitalization and time in residential “treatment” centers.

Starting in middle school up until last year, Cindy had been hospitalized more times than we have heard to date. She told us that the multiple hospitalizations were mainly due to her talking with her teachers about not wishing to live. She was bullied a lot and found school difficult but had learned in therapy not to trust her parents. So instead, she turned to school staff: teachers, counselors, psychologists, and therapists. These professionals deduced there must be additional neglect for Cindy to be feeling so much distress and reported her parents to authorities. She and her family were watching TV when she was removed from their home. Cindy eventually came to equate disclosing her feelings with being hospitalized and her inability to prevent this led her to believe she had a mental illness.

Cindy and her family reported that therapy at NISAPI led to family reunification and this, in turn, led to the cessation of her symptoms.  They told us that their conversations had allowed each family member to find support and feel heard and validated. In turn, their relationships became so much stronger, and Cindy’s behavior changed so much, that “the system” allowed her to move back in with her family.

Today, Cindy still shows none of the symptoms that led to her previous diagnoses. She is attending her final year in high school and preparing for college (she missed her family when away and is in no hurry to leave the area). Right now, she wants to pass her driver’s license test, hang with friends, and pursue her new hobbies. Her new sense of empowerment, she told us, has given her the belief that she can participate in sports that she would have never considered before.  Most importantly, she no longer believes her distress was a sign of pathology and says she never wants to be inside a hospital again!

Tim

Tim was referred to us by a colleague. His biological parent was diagnosed with schizophrenia when Tim was a toddler, although this parent did not raise him. A couple of weeks ago, he became symptomatic with “delusions” and is currently experiencing what we simply call challenges. Tim is not suicidal and has never been hospitalized, but his symptoms worry his family due to his biological parent’s history. We talk with Tim and his family every day. In times when parents or the person experiencing the symptoms are fearful, we talk to them as often as possible. There are no other rules other than not harming people by using words or labels associated with pathology or discussing other themes that imply change cannot occur.

Tim and his parents have already told us they are hopeful. This is because our conversations are not about the “psychotic symptoms” but about the people in his family and what each one would like to see happen. As a team (we always work as two or more therapists) we are learning at this client’s pace what it is important for us to know. We are not looking to identify an event that “caused” Tim’s problems. Rather, we are interested in helping him and his parents to appreciate that events happen, then pass, solutions eventually arise, and life goes on productively. Right now, Tim says he feels safe and that he believes in time he will become who he wants to be.

 Hope for the Future

For these and many other families like them, the trauma of seeking services far outweighed the original trauma that led to emotional distress and worrisome symptoms. In each case (except Tim’s), themes of fear, victimization, and powerlessness came up in our non-directed conversations; we addressed them by building trust, offering options instead of directions, and sharing power as equal persons. As the stories show, and our decades of research confirm, when people are heard and validated they stop feeling hopeless. Little by little, they see for themselves that there is life beyond past or current trauma.

A larger question remains, however: How, at the local level, can the coercion and resulting feelings of oppression and violence that clients self-report be recognized and changed? Although we do not yet have the answer to this wider challenge, we believe that sharing a glimpse of our clients’ stories will raise awareness across the mental health field.

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* Additional contributors: Joanna Buickians, LMFT; Emma Wilson, MSW; and David Abramovitch, LMFT

Editor’s Note: Transcripts of the interviews from which these case studies were taken can be found on the NISAPI website. The podcast versions are available on Podbean.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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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.

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