Living With Psychosis
Having a psychosis is challenging. The psychosis may be confusing, disorganizing, frightening and start quickly (e.g. after sleep deprivation) or emerge over months to years. Informed primarily by individuals who have lived with psychosis, this section provides suggestions and insights intended to help individuals adapt, cope and become inspired.
Recognizing the overwhelming nature of early episode psychosis, NAMI offers the following suggestions to assist you in your experience.
- You are not alone. Many people have been there before you in living with psychosis. About 3 percent of people will experience psychosis and many have given back by writing and sharing their experience and coping strategies both from the individual and family perspectives. This website section includes information and insights from who have had psychosis. Some of this information may be helpful. Review this section for other resources or visit the resources section of this website to learn more about what may be available.
- Peer support is learning from someone who has been there. People who have walked in your shoes have a unique perspective to offer. Peer resources are growing across the nation and service models are recognizing the value of peer specialists. Ask your local department of mental health or community health center where to locate these resources. Check out the NAMI Connection program to find out if these free peer support groups may be available in your community.
- Self care is a crucial way to maximize your strengths and resources as you learn to live with psychosis. Careful attention to sleep, good nutrition, stress management and support is essential.
- Evaluate any potential triggers to the psychosis—such as sleep deprivation or substance use, and address the stressors.
- Stay connected. Shame and anxiety often make it hard to share the experience with others, but living with the stress alone is also a real burden. Selectively share your experience with people who love you and may be wondering if they can support you. Friendship and love make all the difference in the experience of any major symptom of crisis. Isolation compounds the difficulty of living with psychosis.
- Develop strategies. There are strategies that have been developed to reduce the impact of hallucinations in day-to-day experience. These strategies focus on principles of cognitive behavior therapy to examine the meaning and weight one should give sway to a critical hallucination. These experiences can be evaluated and how one thinks about them makes a difference. Reflect on what you have tried so far and stay with what works for you. Other ideas include music to reduce the intensity of auditory hallucinations, distraction as in watching TV, and ignoring the experience as in A Beautiful Mind. Individuals with lived experience offer their own real-life suggestions; reviewing this list, available in this Living With section, may help you think about strategies that may work for you.
- Reality test your experience with people who care about you. If you are having trouble assessing the reality of an experience talking it over with another person may help sort it out. It will also reduce the burden of feeling alone with a difficult experience.
- Stay safe. Psychosis may create a crisis in your life but there are interventions and treatment services, as well as a community of people who know this experience, to help you. Desperate feelings may lead to suicidal thoughts in some people who first experience this symptom or symptoms. Be sure to have thought through a crisis plan if you have ever felt suicidal and stay connected to the people interests and purpose that give your life meaning. Review our section on dealing with thoughts of suicide for additional insights.
- Don’t be defined by the experience of psychosis. Keep your strengths and interests strong in your life and gain inspiration from other sources when establishing your own unique responses.
- Be sure to get a medical assessment from a health care professional.
Feedback and Tips
NAMI’s 2011 survey of individuals and families who have experienced psychosis invited direct feedback from participants. The following lists are highlights from people’s direct responses and may provide insight, tips and strategies to consider in your own experience.
What issues were most challenging for you with your first episode of psychosis?
- Telling other people; confronting stigma
- Knowing what to believe; separating reality from delusion
- Not being able to trust themselves or others
- No long being taken seriously by others
- No long being taken seriously by others
- Starting over; not knowing where to start or “what’s next”; not belong able to “picture a future”
- Continuing school or returning to work
- Taking medication; side-effects
- Fear of relapse
- Financial survival; meeting family responsibilities
- Finding the right doctor or therapist and medication
- Suicidal thoughts
- Losing control
- Not being able to stand up for themselves
In what ways have others helped you?
- Identifying problems early
- Listening patiently and compassionately, without making judgments
- Making suggestions without being confrontational; remaining gentle and calm
- Validating the experience while providing a sense of reality; explaining
- Keeping them from harming themselves
- Taking them to an emergency room or making appointment and taking them to a doctor
- Providing a safe place to rest or recover
- Flying or driving long distances to be with them
- Admitting them to the hospital
- Explaining the nature of the illness and what was happening
- Building trust by making decisions together;
- Prescribing the right medication
- Prescribing cognitive behavioral therapy
- Mobilizing and coordinating family and friends
- Providing child care, cooking or taking on other daily chores
- Providing financial support
- Packing up an apartment and putting belongings in storage during a long period of recovery.
- Encouragement that “normalized the experience,” including steps toward recovery such as finishing school or returning to work
What were your immediate needs when you were first in your crisis with psychosis?
- Getting rid of voices and paranoia
- Knowing the difference between what was real and unreal
- Hospitalization, medication and stabilization
- A safe place and protection
- Access to a good psychiatrist or counselor
- Validation of their experience; someone to listen who could be trusted
- Information and explanation
- Financial assistance
Individuals who had experienced psychosis offered many helpful suggestions to people who might experience it for the first time—including suggestions of resources they had not had themselves, but wish they had. Suggestions include:
- Find the right doctor and medication. Don’t stop until you do.
- Take your medication
- Pray. Find your spiritual strength
- Know what “triggered” your psychosis; avoid them
- Learn stress reduction and management
- Keep a sense of humor
- See a doctor right away when it starts
- Keep appointments
- Get cognitive behavioral therapy
- Be selective about whom and what you tell, but stay connected to others
- Do what you can incrementally
- Do puzzles
- Read books
- Don’t look backwards; move forward
- Take care of all the areas of your life: sleep, proper diet, water intake, spiritual social needs, relaxation; create a balanced life.
- Listen to or read stories of positive role models; people who have had similar experiences
- Laugh at negative voices
- Learn to trust and cooperate; don’t fight
Changing Experiences and Needs
The Bridges Consumer Education Course, developed by NAMI Tennessee, has developed a way to describe the predictable stages of recovery in mental illness. Specifically it looks at the ways that individuals with a lived experience uniquely respond to the trauma of mental illness. NAMI’s Peer-to-Peer program also utilizes this information on events, stages, emotions and needs to help provide one way to understand the experience of this type of trauma.
This may be helpful for people and families experiencing psychosis and may offer insights on the process that individuals affected directly may be experiencing as well as the changing needs of each stage. It is important to note that this is just one example of a common journey of a response to trauma. This process is not linear as it is written—people travel through these stages at different points in their experience. The events listed in these three stages can take place over weeks or months. The phases that follow them can take months or years.
This outline recognizes three stages, or events, of recovery. These are the three events and stages of the individual perspective adapted from the content of Bridges, used by NAMI Peer-to-Peer and based on feedback of many people with lived experience currently in recovery.
Event 1: Crisis/Stage 1:Recuperation
The first “mental event” of a crisis in this context is caused by psychosis. It is recognized as traumatic and overwhelming by most who have experienced it. The normal emotional response to this psychic assault is dependence, a stage of vulnerability marked by physical, emotional, mental and spiritual exhaustion.
This is the stage of recuperation, where feelings range from excruciating pain to absolute numbness.
- Denial, confusion, humiliation, isolation, self-hatred, resentment and anger
- A safe place to rest—a lot of sleep
Someone to take care of you
Someone to ensure your basic needs are met—nutritious food, hygiene
“I am unable to take on even the simplest tasks of daily living.”
Intervention that may include medication
Event 2: Decision/Stage 2: Rebuilding
Decision making begins when the period of recuperation is complete—a time frame which individuals define as “a couple of months to a couple of years,” depending on the nature and severity of their illness experience. No one can make this decision for the individual. If it is rushed, there may be a setback. If it is delayed when the individual is really ready, they will likely begin to feel increasingly bored and empty.
Rebuilding really means re-establishing yourself and reclaiming your independent place in life. In this stage, you begin to take responsibility for getting the help you need to live and begin to participate again in work, school or other outside activities. This is a stage in your experience when you begin to trust others and yourself. This is a very emotional stage when you may experience wide swings of mood which are normal reactions to the up-again/down-again nature of rebuilding and adjusting to circumstances.
This is a stage of rebuilding independence and finding the ability to do things once again. You may need help in relearning and practicing living skills. You may feel “up” when things go well and “down” when things don’t.
- Hope, grief, discouragement, boredom, self-doubt, trust, fear, excitement, anxiety, frustration with setbacks, pride in successes
- A place to tell your story—to have others hear your pain and despair
To learn about psychosis: “What is happening to me and why?”
Persons who believe in you—mentor/teacher/friend/parent
Getting and managing money, food, school, clothes, living situation
Learning (or relearning) social skills and working or school skills
Event 3: Awakening/Stage 3:Recovery/Discovery
In this stage, rebuilding leads to a new sense of self. There is a feeling that one has “come through the fire” and is transformed into a different person that is whole and not just defined by their psychosis or mental illness. Individuals begin to dream again about who they can be.
This is a stage when the process of interdependence becomes most important, as does a sense of wanting to belong and wanting to matter to others.
- Self-acceptance, appreciation of others, confidence, anger at injustice, assertiveness, helpfulness to others
- A personal vision—a dream to strive for
People who appreciate you
Intimacy: someone to love and care for
Meaningful work or school experience—a chance to leave footprints
To advocate for myself and others
when exploring these three stages of experience and response, those with a lived experience of mental illness or psychosis recommend you consider:
- Recovery is a process we do, not what professionals or families do for us. As much as we can, we must be aware of and honest with ourselves. It is up to us to evaluate whether we are getting our needs met, and whether we are rushing, resisting or growing with the process.
- None of the feelings we described during the three stages of response to trauma are “wrong” or “bad”. They are normal reactions we all experience when struggling to cope with serious mental illness or psychosis and the trauma that comes along with it. We can accept the feelings as part of being human.
- The mental events listed in these three stages can take place over weeks or months. The phases that follow them can take months or years. For many of us it takes years.
- The process of response to trauma is like a spiral. Each time we have a crisis, we feel the pain just as deeply. It is good to honor the pain while noticing the heroism it takes to continue our journey into recovery. Each time we experience a setback we can use what we learned before to move through the stages more quickly and surely. We may be in several phases at once.
- We can all remember a time when we were drowning in the pain of our psychosis, but we can also look back and see that we came through that experience. This knowledge can help us feel stronger and gives us hope that where we are at any given time is not where we have to stay.
People experiencing psychosis may find themselves confronted with the possibility of hospitalization, and the consideration of a psychiatric hospital setting may be new to some.
The following information, inspired by NAMI’s Peer-to-Peer education program, is offered to help address concerns and to validate individuals’ experiences.
It can be very hard to figure out “how things work” in a hospital. Wherever you are, it is probably important to realize a few things:
- The staff knows “the rules” and the patients don’t. This is one of the most confusing parts of being in a hospital setting. It may keep one feeling uncertain about how to act. It may contribute to fear, because we often equate “knowing the rules” to “having the power.” In the case of the hospital staff, they have a job to do and that includes supporting your efforts to get back to health. This is the ideal. They are there to ensure that your needs for medical care, nourishment and a safe place to begin to recover, as well as your safety overall, are met.
- Be alert for your own triggers. Inpatient and outpatient psychiatric treatment settings are just loaded with triggers. Abuse histories, memories of bad care, control/being controlled issues, rebellion—and all may be present to one degree or another in a treatment facility. The best plan of action for entering any new environment is to listen. In a psychiatric treatment facility everything you do and say is subject to interpretation by others. You can’t change that, but you can change your responses to people based on your own self-knowledge. Know when at least some of what you are experiencing may be connected to old wounds and past events. Try your best to separate current reality from the past.
- If you feel your rights have been abused, the grievance procedures are usually posted behind the nurse’s station. If they are not, ask any staff member to give you a copy. Most facilities with Joint Commission or Commission on Accreditation of Rehabilitation Facilities (CARF) have a Client Rights and Responsibilities document that outlines a complaint procedure as well. There is often a patient advocate available within the hospital. Your family and friends should be kept informed of your experiences. Other patients may also notice the same things you see, but this will not necessarily be the case. It is always a good idea to take down written notes on what happened, with whom, and when.
- And a few other thoughts:
- These days, hospital stays are shorter than they used to be; however, it is impossible to know just how long you may be there once admitted. It isn’t a bad idea to pre-pack a bag with some things that may provide you with extra comfort during your stay: a comfortable pillow, slippers, pictures of loved ones or a book, for example.
- When you are in the hospital notice the staff people who seem genuine and real. They will never become your friends, but it can sure make a difference if there is someone on each shift that you feel comfortable talking with.
- Don't feel like everyone there has a right to know everything about you. That means, among other things, that when your roommate discloses something intensely personal to you, you do not have to reciprocate.
- If a particular staff person doesn't (for whatever reason) feel "safe" to you, know that you can refuse to discuss things with staff as well as with the other patients.
- No matter how much you feel that the people you meet in the hospital like and understand you, and no matter how much you feel as if the people who are normally important to you do not, the hospital is not the place to begin a romance. While it is possible to find true love in the hospital, true love will also wait until after you both have been discharged.
Work and School
Work and school are important parts of a young person's life and identity. Careful choice regarding work, school and social supports are crucial for recovery.
Most of the research literature on rehabilitation and recovery efforts such as supported employment and supported deals with people who have lived with a disability for some time. This research focus somewhat limits the usefulness of this work to individuals with new onset of psychosis.
NAMI is developing materials tailored to this developmental stage of life interrupted by psychosis with the intention that these materials will provide relevant information that will help get individuals back on their developmental path. For this reason, a section on education and work is coming in phase 2 of this project.
Suicide and Prevention
People experiencing psychosis and people with mental illness are more at risk for suicide than others. According to the American Foundation of Suicide Prevention, at least 90 percent of people who kill themselves have a diagnosable and treatable psychiatric disorder. This is something we can’t take lightly.
Here are some of the warning signs for suicide. The following checklist is provided
by the National Suicide Prevention Lifeline.
- Threatening to hurt or kill one self or talking about wanting to hurt or kill oneself
- Looking for ways to kill oneself by seeking access to firearms, available pills or other means
- Talking or writing about death, dying or suicide when these actions are out of the ordinary for the person
- Feeling hopeless
- Feeling rage or uncontrolled anger or seeking revenge
- Acting reckless or engaging in risky activities- seemingly without thinking
- Feeling trapped—like there’s no way out
- Increasing alcohol or drug use
- Withdrawing from friends, family and society
- Feeling anxious, agitated, unable to sleep or sleeping all the time
- Experiencing dramatic mood changes
- Seeing no reason for living or having no sense of purpose in life
As others with a shared experience can attest, feeling suicidal is a very painful place to be.
The National Suicide Prevention Lifeline is a free 24 hour service available to any person struggling with thoughts or plans of suicide. They can be reached at 1 (800) 273-TALK (8255). Crisis center staff will be available around the clock to listen and talk with you. If needed, they can give you information about community resources or services for after the call is over. Call any time and as many times as you need to. The call is free and can be reached from any phone in the U.S. The line is open 24 hours, so you will always be able to reach a crisis worker, and your call is confidential.
For Spanish language support, you can call 1 (888) 628-9454. The National Suicide Prevention Lifeline is the only federally funded national hotline network providing this service.
Take note that people call the Lifeline for a variety of reasons. If you need help there is no need to worry if your situation is “severe enough” or if you will be a burden. The crisis counselors are working to serve you in times of need and distress. Some reasons people call the Lifeline include:
- Suicidal thoughts
- Information on suicide
- Information on mental health/illness
- Post-disaster needs
- Substance abuse/addictions
- To help a friend or loved one
- Relationship problems
- Economic problems
- Sexual orientation issues
- Homelessness issues
- Physical illness
- Family problems
Here are some additional thoughts to consider, provided by the Depression and Bipolar Support Alliance (DBSA):
- Even if it doesn’t feel like it, suicidal thoughts are temporary. Suicide is permanent. Don’t give in to suicidal thoughts. You can overcome them.
- Your feelings of hopelessness are not the truth. When you feel this way, it’s your illness talking—your mind is lying to you. Remind yourself that suicidal thoughts are not reality.
- If you are thinking of suicide, it is important to recognize these thoughts for what they are: expressions of a treatable medical condition. They are not true and they are not your fault. Don’t let fear, shame or embarrassment stand in the way of communication with your physician, therapist, family or friends. Tell someone right away.
- Tell a trusted family member, friend or other support person you can talk with honestly. Try not to be alone when you feel this way. This may mean sitting quietly with a family member or friend, going to a support group or going to a hospital.
- Get help. Tell your health care professional. Suicidal thinking can be treated. When suicidal thoughts occur, they are your signal that, more than ever, you need help from a professional.
- Know that you can get through this. Promise yourself you will hold on for another day, hour, minute, or whatever you can manage.
- If you are feeling “out of control”, it’s important to seek help immediately—even if you are not having suicidal thoughts.
Handling an Emergency or Crisis
The U.S. Surgeon General has reported that ‘the likelihood of violence from people with mental illness is low.’ The overall contribution of mental illness to the level of violence in society is ‘exceptionally small;’ however, situations requiring professional intervention and response can still occur. If you or your loved one is in danger then it is crucial that you seek help immediately. If your friend or relative is a threat to himself or to others around him, then assistance is needed to stabilize the situation and your friend.
Ideas for dealing with an emergency situation, particularly during an episode of psychosis include:
- Call 911. Inform the dispatcher that your friend or relative has a history of psychosis and is in danger or is endangering others. Police and or an ambulance may be needed. You may request a crisis intervention team to be dispatched if your jurisdiction has one available. Crisis intervention teams (sometimes called a mobile crisis unit) are usually comprised of police and first responders with specialized training in how to deal with someone with a psychiatric emergency.
- Take your friend or relative to an emergency room if they are experiencing distress or are a threat to himself or others during a psychotic episode. Alternatively, if there is a psychiatric emergency room available in your community then you can take your friend there. Upon arrival to an emergency room your friend will be evaluated by a psychiatrist for admission. If your friend is admitted involuntarily then he will probably be kept there for seventy two hours for further evaluation and will be considered for further admission and treatment.
Other situations that may call for intervention include helping to make an emergency appointment with your friend’s healthcare provider if he has run out of his prescribed psychiatric medicines or is in danger of running out of them in order to help prevent a possible emergency situation.
It is worth noting that some communities offer ‘mobile crisis’ units or teams. Crisis services may include 24-hour, seven day a week, toll-free telephone triage, mobile crisis services, peer support services and more. You can contact your NAMI State Organization to find out what crisis services may be available in your community or to learn more about how to plan for or respond in a crisis linked to psychosis.
Please know that some of these action steps may seem daunting but they are necessary in crisis situations in order to protect yourself and your friend or relative with psychosis.
Being proactive and having things in order during a crisis is the best way to navigate life when circumstances become critical. Ideally, having a prior directive that people can follow can make a mental health crisis more manageable and may even avert the event by enabling close friends or family members to see the early warning signs. With a first episode of psychosis, however, there is not the opportunity for foresight. However, once you have a better understanding of potential risks, you may want to take steps to help you plan for and even prevent future crises. The Wellness Recovery Action Plan (WRAP) and the U.S. Substance Abuse and Mental Health Services Administration (SAMHSA) both have information on developing your own crisis plan for the future.