What is Early Psychosis?
Seeing or hearing things that are not there, having thoughts that seem odd or untrue, or feeling confused when trying to think or speak are some of the main ways psychosis can make life difficult. Symptoms of psychosis tend to first appear between the ages of 12 and 25. During this early phase (sometimes called the “prodromal phase”), problems tend to be mild, short-lived and infrequent, and the person affected is likely to have enough insight to know that their experiences (e.g. hallucinations) are not real.
People with early psychosis might report…
• Feeling that “something is not quite right”
• Having unusual thoughts and confusion
• Experiencing fear for no good reason
• Hearing sounds or voices that are not there
• Declining interest in people, activities and self-care
• Trouble with communicating and understanding
Meanwhile, family members or friends may observe…
• Social withdrawal
• Odd, unusual behaviors
• Decreased motivation
• Inability to enjoy activities
• Mood swings
• Pervasive anxiety
• Disrupted sleep patterns
• Changes in appetite and eating
• Preoccupation with physical symptoms
As psychosis continues to develop past the prodromal phase, the line separating real from unreal begins to blur. Thoughts that may have once seemed unusual or irrational (“people are out to harm me”) become increasingly credible and significant for the person having them. Periodic lapses in speech or comprehension may become permanent if untreated. The point when symptoms interfere with judgment or ability to manage daily tasks is called an “acute psychotic episode”. The first acute episode is often a shock to oneself and one’s family and often leads to hospitalization.
Signs of a pending episode might include…
• Hallucinations: hearing voices or seeing visions
• Delusions: beliefs that are unusual or unreal
• Disorganized thinking or speech
• Difficulty concentrating
• Suspiciousness of others
Or, changes in behavior...
• Loss of previous ability in school or work
• Tendency to isolate and withdraw from
others(e.g., chooses to remain in room)
• Efforts to avoid others (e.g., running away)
• Change in facial expression and appearance
• A loss of shared interests and preoccupation with
new ones that others find hard to relate to
Causes of Psychosis
Researchers have not yet pinpointed a cause or set of causes that explains why some people develop psychosis and others do not. Everyone has the potential to experience symptoms of psychosis. Profound sleeplessness or heavy substance use (e.g., methamphetamine, hallucinogenics) can cause anyone to temporarily hear or see things that are not there. In addition, some physical illnesses can have psychotic features such as Cushing’s syndrome, Huntington’s disease, or advanced AIDS. Experts generally agree that most of the risk for psychosis is genetic (i.e., what we are born with) while some risk is environmental (i.e., where we live, what we do).
One of the biggest and oldest falsehoods about psychosis is that it only happens to people with the wrong kind of upbringing. New studies have completely discredited this myth. While it is true that high stress, unhealthy diet and poor sleep hygiene can make symptoms worse, it is not true that psychosis is a direct result of the way we were raised.
Early Treatment for Psychosis
Today, there are more treatment options for psychosis than were available even a few years ago, and options are not limited to medical management. Research has demonstrated that some educational, counseling and support strategies are also effective. Medical treatment is still an important tool for managing symptoms that become overwhelming or uncontrollable, but medicine alone cannot lead to a full recovery. Long term recovery requires educating oneself about the disease, developing coping strategies that work, and gradual reengagement with daily routines and future plans. Recovery can take from 6 to 24 months, and the best people to help guide you through it are trained professionals and people who have successfully lived with psychosis. A therapist who is specially trained can help families stay focused and separate facts from false claims about psychosis. Meeting with others who have “lived experience” can provide insight, tips, and support. Occupational Therapy and Vocational/Educational (Voc/Ed) Counseling are also worth considering as enhancements to treatment. Occupational Therapy can help to improve everyday living (e.g., exercise, doing what ‘feels good’, better sleep) whereas Vocational/Educational Counseling can help with new challenges at school or work.
No matter what treatment or combination of treatments you choose, the key to greater success is catching signs and symptoms early on. As with other diseases, like diabetes, psychosis does not appear without warning. Symptoms begin as subtle indicators that “something is not quite right” and then worsen over time. Families that attend to symptoms while they are still early and prodromal (see "What is Early Psychosis") are not only better positioned to manage those symptoms, but also prevent those symptoms from becoming unmanageable. In other words, some studies suggest that early interventions to manage psychosis can actually stop the progression to more serious disorders, such as schizophrenia or bipolar disorder.
“Catching psychosis early” means working with a professional who has special training in treating psychosis as soon as possible. A specialist can ask the right questions to find out if a person is likely to be developing psychosis.
Delaware CORE’s staff is specially trained to treat early psychosis and provides a full range of treatment options. These include individual counseling, education, multifamily groups, psychiatry, occupational therapy, and vocational/educational counseling and advocacy. For more information, call 877-777-2505.
Recovery from Psychosis
Recovering from an episode of psychosis can take 6 months to 2 years. It is important for people in recovery to stay motivated and committed to meaningful personal goals. Providers of treatment or support should keep in mind that the ultimate goal is not only to “reduce symptoms,” but to get the person back into school, work, or relationships they were missing out on.
Here are some added tips for helping to maintain a steady recovery:
Give Everyone Involved the Time and Space They Need to Learn.
Accepting that psychosis is an ongoing life issue is a big change for the person who experiences it and for the family. When psychosis is first recognized, everyone involved has a lot to learn. They must keep an open mind when deciding what to do next. For the person who has psychosis, the change means taking on new responsibilities for self-care (e.g., attending to sleep and exercise, participating in treatment) while at the same time relying on others (e.g., family, professionals, employers). For families, it means being available, while at the same time respecting their loved one’s rights to privacy and personal decision-making. Everyone in the family is in recovery together as they seek to find new balance.
Learn to Recognize the Symptoms
Taking care of oneself becomes easier when one can read symptoms well. This goes for everyone involved. Sometimes it is the person with early psychosis who is first to notice changes in mood or attention; other times, it is someone else. In either case, it is important for each person involved to track the kinds of situations (e.g., in large groups) or times of day that tend to trigger changes; using a calendar is often helpful. A few weeks of tracking can help everyone get better at anticipating problems before they arise and preparing accordingly. The key here is to keep the lines of communication open. Symptoms are not always apparent to family and friends; they may need to be told when changes are happening. Scheduling regular check-ins or updates (e.g., at mealtimes) is one way to insure that caregivers stay informed without becoming overly intrusive.
Get and Give Support
Another important part of recovery is learning that you are not alone. Over the course of a lifetime, 1 out of every 50 people experience the full onset of a psychotic episode. However, because many hide the experience from others, they are left with the impression that what happened to them is unique. By reaching out to organizations like Delaware CORE and the National Alliance on Mental Illness(www.namidelaware.org), one will find that there are many people who not only live with psychosis, but also attend school, go to work, play sports, and spend time with friends. Contrary to the media’s depiction of people with psychosis as permanent residents of institutions, most live in communities and can offer valuable advice and counsel that is based upon “lived experience.” A peer with psychosis can often understand in just a few words what takes paragraphs to explain to someone who has no experience with the illness. Peers that reach out to those “in the same boat” not only gain a valuable resource, but become a valuable resource as they share what they have learned with others.
Recommit to Personal Goals
Learning to live with a diagnosis of psychosis or early psychosis is a big adjustment. The process usually involves some loss and grieving. Sometimes it involves giving up some independence to let others help; sometimes it means putting plans on hold while one deals with the change. Grieving is a natural part of letting go of immediate goals, and it is important to make room for these emotional losses while reconsidering one’s priorities. Yet, giving up some of one’s plans is not the same as giving up entirely. As with any major shift, it is essential not to give up hope for one’s most important goals. In fact, now is the time to take stock of what is most important and recommit to it by finding people who will support one’s efforts to achieve and stay away from those who might argue that psychosis prevents the attainment of life goals. Even if progress happens at a slower pace, one must never surrender that which is most important.
It is common for people with psychosis to have times when they feel helpless and overwhelmed by symptoms. When those times make it hard for them to make decisions about treatment, it is sometimes necessary for trusted family members to step in and provide guidance on their decision making. The preferences of the person in recovery should always be the basis of any treatment decision, no matter who is making it. When it is possible to do so, people in recovery should be actively involved in making decisions about treatment. They should be encouraged to learn and ask questions about available options, and also encouraged to make those preferences known to the people who could potentially make decisions on their behalf. Similarly, people with psychosis should be made fully aware of their rights (e.g., regarding medication, access to education), as should their supporters. Family and friends can and need to support the recovery process, but it is the person in recovery who ultimately determines the goals of that process and gives it real meaning and worth.
Be Conscientious About Medication
Medicine is sometimes necessary as a defense against overwhelming symptoms, but it is not a cure all. Anti-psychotic medicines can take 4-8 weeks to be fully effective, although you may notice a gradual change during this time period. There are two main classes of medication: “Typical” antipsychotics have been around the longest, but these may cause side-effects such as involuntary movements. “Atypical” antipsychotics are more recently developed, tend to have fewer side effects, and are more frequently prescribed. It is critical to track changes in how you or your loved one responds to a drug (e.g., maybe keep a journal) and report back to the doctor or psychiatrist on any side effects. While medicine takes time to work, doctors are not mind readers and depend on patients to tell them when a drug is working or not. No medication is going to address every problem, so some symptoms are likely to persist even when taking medication. Living with some lingering symptoms of a severe mental illness is a reality for many people, but many people are able to manage their residual symptoms by exercising, getting plenty of sleep, learning to relax, engaging in pleasurable activities, or seeking accommodations at work or school. A combination of medication and therapeutic activity is the key to many peoples’ life success.