Information for Individuals and Families

The Internal Experience of Psychosis

FamilyAt first: People experiencing symptoms of psychosis often report that their minds are playing small tricks on them. They have difficulty screening out distracting information and sensations, and attending to what is important. However, people can stay focused with greater effort, and can usually dismiss or reject thoughts that they recognize are irrational.

Then: Visual experiences may become brighter or distorted in color, shape, or size. Soft or brief sounds may seem loud and irrelevant background noise distracting. The person experiences an increase in both quantity and quality of sensations. There is a sense of feeling overloaded with jumbled memories, thoughts, and stimulation from the environment.

As symptoms of psychosis progress: It becomes harder to concentrate on a book or conversation, or to carry on a conversation that would make sense to another person. It also becomes increasingly difficult to distinguish internal thoughts from external perceptions. For instance, upon hearing a noise outside while thinking about an event that occurred yesterday, the sound registers as something that happened yesterday. Irrational thoughts or beliefs may be accepted as reality, and may become fixed and resistant to logical evidence to the contrary. Many people begin to experience fear of being harmed or injured by other people, even friends and family.

Finally: A person experiencing full-blown psychosis loses control over his will, is disconnected from his own actions, and has an inability to follow through on a thought or action. A person experiencing psychosis might be very anxious, even panicky, and make serious errors in relating to the world. For instance, a person might see a stranger while walking down the street, but, in his confusion, think that he knows this person. He might begin to think that this person is almost everywhere and is following him. In an extreme state, this situation would become quite frightening. The person would miss more subtle cues that would correct his distortions; consequently, he would become completely out of touch with reality.

What Others May Observe

At First: Others, especially family members, may notice that their loved one starts to think and act differently without knowing just what is wrong.

Then: As the person’s level of functioning declines and symptoms become more obvious, it is harder to rationalize or explain away the unsettling realization that something is markedly wrong. The pre-psychotic or “prodromal” symptoms may persist for weeks or months unchanged but generally intensify as the person becomes overtly psychotic.

As prodromal symptoms progress: The person may have trouble expressing opinions or thoughts because she can’t concentrate for long. When talking to a professional, a young person may express stress, trouble with coping, or may feel different from her peers in some way. Her speech may be vague and she may have odd ideas. Initial complaints to professionals often focus on somatic (or physical) symptoms, particularly sleep disturbance and difficulties with memory and concentration. Others have vague physical symptoms that move around the body and that defy ordinary medical diagnoses.

With time: People experiencing early symptoms of psychosis tend to avoid social contact. They may also be less expressive or spontaneous. It is important to recognize that such behavior is part of an illness process, not rudeness or laziness. Insignificant critical comments or subtle looks can send these young people into extreme states of self-doubt, irritability, or paranoia. Other people may feel uncomfortable around them. As young people realize this, they may become demoralized and depressed. In addition, they may be guarded and try to conceal their difficulties, especially from professionals.

Finally: As symptoms become more serious, a person’s speech may seem fragmented or even incoherent. He may appear very suspicious and express bizarre ideas or even whole belief systems that are disconnected from reality. For example, he might be convinced that someone is reading his mind, that someone is controlling his thoughts with wires in his head, that others can hear his thoughts as if they were spoken out loud, or that someone is inserting thoughts into his head. The person is most likely desperately trying to make sense of his experience or thinking but is reaching distorted and inaccurate conclusions.

The Family’s Experience

Family members are often quite frightened or frustrated. They have seen an alarming change in their loved one’s behavior and may be unsure of what is going on. If they suspect a mental illness, they may be afraid to have their suspicions confirmed; their child or sibling may remind them of a family member with serious mental illness. They may feel ashamed or afraid that it is their fault. Some families may have religious or cultural beliefs that reject the possibility that the changes in their loved one are due to mental illness. In all situations, the professional needs to be encouraging and supportive. Most importantly, professionals need to listen to the family’s experience and concerns.

Often, families and friends ask how they should behave and talk to a person who is psychotic or showing early signs of a psychotic illness. There are no set rules, but some general guidelines are helpful:

  1. Be yourself. Understand that this is not your fault.
  2. Get information to help you understand the illness that is afflicting your loved one and how it affects his or her behavior.
  3. Try not to take it personally if your loved one says hurtful things to you when he or she is unwell. Minimize arguments or long discussions. Stay as positive as possible.
  4. Reduce stressors. Tone down emotions. Research shows that keeping the emotional atmosphere as calm as possible can speed recovery and help prevent relapse.
  5. Communicate simply and clearly.
  6. Solve problems step by step.
  7. Ask for help from professionals if you have questions.
  8. Don’t ignore violence or risk of suicide.
  9. Hopefully, you are involved in your loved one’s treatment. Whether or not the provider working with your loved one has permission to speak with you, you can always offer information and observations.

The information provided above was extracted from the booklet Recognizing and Helping Young People at Risk for Psychosis, developed by the Portland Identification and Early Referral (PIER) program and utilized in conjunction with the EDIPPP initiative. Please click here to access the full document.

Additional Information

Please see below for additional resources and materials that may be of interest to individuals and families, including personal stories of recovery, tips for understanding and managing one’s illness, strategies for helping a family member, and opportunities to connect with others who are facing similar experiences.

Tips List: 

Here are personal stories that highlight examples of young people who have experienced early psychosis, and the ways in which early intervention programs have helped them to move forward with their lives.

  • This short video from EDIPPP highlights the experiences of individuals and their families, along with key lessons learned from this early intervention initiative.
  • Click here to access 24 short video vignettes highlighting stories of recovery. These videos were developed in conjunction with a project funded by the National Institute of Mental Health (NIMH).
  • The organizations/programs listed below also offer helpful resources for individuals and families:
Organizations

The Substance Abuse and Mental Health Services Administration (SAMHSA) has supported the development of several technical assistance resources to help states and communities to plan, implement, and operate coordinated specialty care programs and associated services and supports to meet the needs of individuals experiencing a first episode of psychosis.  

The Early Assessment Support Alliance (EASA) is a program in Oregon that provides assistance to persons in early stages of psychosis. The EASA website includes a section on “Path to Recovery” that offers helpful tips for recognizing and managing one’s illness.

The National Alliance on Mental Illness (NAMI) has an online fact sheet, “What Families Can do When a Child May Have a Mental Illness,” that provides a good overview of information for parents including: behaviors to note, explanations of common mental health conditions, tips for getting an accurate diagnosis, how to discuss concerns with one’s primary care provider, information on accessing specialty care, and ways to link with other families that have children with mental health problems.

The Balanced Mind Parents’ Network focuses on pediatric bipolar disorder and is an excellent virtual resource for caregivers and children that include a library of helpful materials for families, FAQs, podcasts, webinars, and a family helpline.

The University of Virginia, with support from the U.S. Dept. of Education, created an online resource entitled “Going to College to promote college success for students with disabilities. The website includes a variety of resources for high school students such as video clips, activities, and additional resources that can help teens plan for college. Through several interviews, college students with disabilities from across Virginia provided key information for the site. These video clips offer a way for teens to hear firsthand from students with disabilities who have been successful. There are modules with activities that will help users explore more about themselves, find out what to expect from college, and learn about considerations and tasks to complete when planning for college.

The British Columbia Schizophrenia Society is a non-profit organization founded in 1982 by families and friends of people with schizophrenia. They are focused on education, fundraising, and advocacy for persons with schizophrenia. Online materials include: Early psychosis: helping your family member (2006), a resource to help families who have experienced the onset of psychosis in a young person; Understanding Mental Illness, a brochure for kids who might know someone experiencing psychosis; and What’s Going on With Me, outlining signs and symptoms of psychosis.

The Canadian Mental Health Association is a nationwide volunteer organization that promotes the mental health of all persons and supports the resilience and recovery of people experiencing mental illness. Of note, the organization offers A Sibling’s Guide to Psychosis: Information, Ideas and Resources that provides helpful information and support to teens and young adults who have a sibling experiencing first episode psychosis.

The Early Psychosis Intervention (EPI), British Columbia, Canada offers a number of online resources for individuals and families, including a Dealing with Psychosis Toolkit, Booster Buddy Video, Family Coping Booklet, tips for Goal Setting, a Lifestyles Outline, and Medications Guide. EPI’s comprehensive website promotes early detection, provides information about psychosis, and offers guidance for seeking help in a manner that helps to raise awareness and decrease stigma. The website includes information about causes, treatment, recovery, and associated problems, as well as client stories and information for family and friends. Please see: http://www.earlypsychosis.ca/ and http://www.psychosissucks.ca/