Finding Your Way Through the Experience of Psychosis

Experience of psychosis can feel scary and isolating, but you do not have to go through it alone. Recovery is not only possible, we know that there are things that we can do to reliably move our lives forward in ways that are most meaningful for us.

Psychosis. It’s a scary word to many people, and because of how extreme and unfamiliar psychotic experiences are to many of us, it can also be an incredibly scary experience for individuals (and their loved ones) who are living with psychosis. Labels like “psychotic” or diagnoses like “Schizophrenia” can feel limiting, defining, and stigmatizing.

That said, it is important to recognize that experience of psychosis is still a part of normal human experience. While less than 1% of the population will meet criteria for a diagnosis of Schizophrenia, it is estimated that closer to 3% of the population may experience psychosis in the context of a mental health disorder, and that many more individuals may have psychotic experiences without ever meeting the criteria for a “disorder”. In fact, we also know that under extreme circumstances (for example, following periods of sleep deprivation, sensory deprivation, social isolation or solitary confinement, or even in experience of grief following a significant loss) many individuals may have experiences of seeing or hearing things that are not there. It is also true that living through difficult circumstances or surviving trauma can impact the way that we see ourselves, the world, and other people, and that sometimes this can lead to thoughts that other people might deem to be “irrational” or “paranoid”, but that tend to make a lot of sense when they are interpreted based on the lived experience of the person who is thinking them.

When we are able to see that psychosis is, in fact, a part of normal human experience, it opens the door for us to recognize a number of other fundamental human truths. One of the most important of these is the recognition that just like with many other things that humans may struggle with, there are things that we can do to take care of ourselves, to improve our situation and to move us forward in our lives and our recovery, and that there are also things that we can do (or not do) that keep us stuck, that prevent us from moving forward, and that potentially make the symptoms of psychosis worse.

What do we mean when we use the word “psychosis”?

Sometimes psychotic experiences can be a part of a broader mental health condition like Schizophrenia, Bipolar Disorder, or Depression with Psychotic Features, or sometimes they can be stand alone experiences that don’t co-occur with other symptoms of a mental health condition. The term “psychosis” also incorporates a number of different experiences, and different people may experience different combinations of these experiences. In mental health settings, when we use the term “psychosis” it generally refers to a more tenuous connection with reality, but we might also be referring to the experience of unusual beliefs or extreme paranoia (delusions), the experience of anomalous sensory experiences like hearing voices or seeing things that others don’t hear or see (hallucinations), or the experience of other forms of disorganized thinking or behaviour.

What kinds of things are not helpful for psychosis?

This is a difficult question to answer, because really, any of the things that aren’t helpful for humans in general are unlikely to be helpful for individuals who are living with, or who have experienced, psychosis. Being ostracized or treated poorly, being stigmatized and misunderstood, or being stripped of control, choice and autonomy are not good for any of us. Individuals with experience of psychosis are no different, and they are no less deserving of care, compassion, choice or control. That said, the healthcare system and society at large haven’t always done a great job in this regard, and as a result, many people who experience psychosis may have had negative experiences in seeking help and may be understandably reluctant to engage with individuals and services that they fear will be dismissive or coercive. In recent decades, the recovery movement within mental health care has led to some substantial changes in the collaborative nature of care for individuals who are experiencing psychosis, but there is still much room for further growth and improvement in this regard. The same can be said for efforts to reduce stigma and to improve our understanding of psychosis within the general population.

Experience of stigma, and internalized stigma, are two areas that often prevent individuals from talking about their distressing experiences and from seeking help that may be needed. It is also true that when we feel alone, scared and misunderstood, we may engage in behaviours that are designed to help us avoid further pain (social withdrawal and substance use are classic examples of these), but that ultimately keep us stuck and that can sometimes make the pain even worse, because these behaviours isolate us with, and may even serve to intensify, our troubling thoughts and experiences.

What kinds of things are helpful for psychosis?

Again, this can be a difficult question to answer, because the things that different people find most helpful will be different. That said, there are a number of things that we know are useful for many people, and while this list is not exhaustive, here are a few key things to think about:

Ask for help. When we are struggling with things, struggling alone can sometimes keep us stuck and can ultimately make things worse. We don’t know what we don’t know, and there are experts out there who have dedicated their careers to studying, understanding, and helping to develop treatments and to identify strategies that are useful in coping with distressing psychosis.
It is important to ask questions and to try to understand different perspectives. If your treatment team is making recommendations that you don’t understand, or if your family or friends are concerned about you and you don’t understand why, then this is a great opportunity to ask questions and to see if you can understand the perspective(s) that they bring. Even in the difficult context of involuntary treatment (when an individual’s decision making about treatment options has been limited), individuals are able to make decisions about the extent to which they engage collaboratively with their team, to gather information, to ask good questions, and to communicate their needs and preferences. Starting from a position of defense, or assuming that others don’t have a valuable perspective, serves to shut down conversation and can often make our relationships feel less collaborative and more confrontational than they need to be.
Gather information about different treatment options and things that others have found helpful. Medication is a helpful tool for many individuals with experience of psychosis, but there are also many other evidence-based interventions that have been shown to be effective. Cognitive behavioural therapy for psychosis (CBTp) is one of the most well-researched of these, but other approaches such as acceptance and commitment therapy, compassion focused therapy and other relational approaches have also been helpful for many people. Peer support groups and other community-based resources are also useful sources of support for many individuals.
Take time to recognize your strengths and to remember what is most important to you. Experience of psychosis may be a part of your story, but it doesn’t define who you are. It is important to not lose sight of what matters most to you, to not give up on yourself or your dreams, and to recognize that you deserve to live a life that is fulfilling to you. It is also important to acknowledge the strength that you have already shown in living with what may have been very difficult or distressing experiences, and the strengths that have always been a part of who you are and how you have shown up in relation to the people and experiences in your life.
Take time to reflect on where you might be struggling. For some individuals, it is the symptoms of psychosis (for example, experience of distressing voices or unusual and upsetting beliefs) that cause them the most distress and that bring them into treatment. For others, these symptoms may be well-managed by medication or may no longer be a part of the picture, but they may be struggling with a sense of internalized stigma, depression, anxiety or fear, or difficulties with motivation or with getting things done. The more aware we are of where we are struggling, the more effective we can be in terms of researching options and asking for help.
Take care of yourself. Similar to the answer above that noted that any of the things that aren’t helpful for humans in general are unlikely to be helpful for individuals who are living with psychosis, it is also true that the things that are helpful for humans in general are helpful for all of us. This includes things like basic self-care involving getting good sleep, eating nutritious food, and maintaining an active lifestyle. It also includes things like devoting time to meaningful activities and to things that bring us a sense of purpose and to cultivating healthy relationships with others.

At Laksman Doell Psychology, our team of Registered Clinical Psychologists are dedicated to supporting individuals who are living with psychosis and complex mental health challenges. Several of our psychologists, including Dr. Faye Doell, Dr. Wendy Zhao, Dr. Philip Desormeau, Dr. Natalie Ferreira, Dr. Nicholas Ostapchuk, and Dr. Sarah Saperia, have received specialized training in cognitive behavioural therapy for psychosis (CBTp), and together, they provide compassionate, evidence-based care that helps people living with psychosis to feel less alone, to understand their experiences, and to move forward in their recovery.