In this section:
Path to Recovery
What matters to you?
- Relationships with friends and family
- Making a difference in the world
- Having fun
- Being able to support myself
- Having a home
- Getting through school
- Having a good job
Each person's symptoms and recovery process are unique. However, there is much to learn from the experience of others. EASA attempts to summarize these experiences in order to increase the likelihood that each young person will succeed.
1 Recognizing a Problem
Changes in your perceptions
- Things look, sound or feel different than they did before Examples: More intense, boundaries blurring, hard to figure out what things are for
- Seeing or hearing things that other people don't
- Other changes that are hard to describe, such as changes to perception of distance or time
Changes in your moods
- Angry or depressed disproportionate to your circumstances
- Extreme highs and lows
- Fear of others hurting you
Changes in your thoughts
- Obsessing about certain ideas
- Racing thoughts
- Developing unusual beliefs
Changes in your sleep
- Not sleeping, sleeping all the time, or sleep reversed from normal
Harder to do things
- Having trouble with memory or concentration
- Not doing as well in school or work
- Having conflicts in relationships with family or friends
- Withdrawing socially from other people
- Not as interested in basic self care: eating, staying clean, etc.
Others expressing concern that there's something wrong
- Changes in appetite, or other signs of physical illness
Quite often people with psychosis do not recognize that they have a problem. It is often others in their lives who notice significant changes and encourage the person to get help. Most people who experience psychosis have difficulty accepting the need to manage it as a medical condition. Why?
- No matter what the medical condition, most people go through a period where they don't accept the need to manage it. It is part of the normal process of adapting.
- Because psychosis affects the brain directly, the person's perceived experiences seem immediate and real.
- Psychosis can also interfere with a person's ability to "test reality"- to critically analyze whether their own conclusions are correct.
- Many people have inaccurate or old ideas about what "psychosis" and similar terms mean. They may have "internalized stigma"- in other words, they are unable to accept the labels because of all the negative assumptions they have about those words.
Most people define the problem in their own way, using their own words. Some common language people use to describe their experiences:
- "Special sensitivity"
- "Unable to filter information"
- "Special abilities"
- Difficulty concentrating or sleeping
Some of the symptoms are harder for a person to recognize than others, although others around them may be noticing the changes.
Symptoms which are EASIER for people to recognize include:
- Difficulty with concentration
- Difficulty with sleep
- Obvious visual or auditory hallucinations, although people often have trouble knowing how to interpret these
- Difficulty with day-to-day functioning at school, work and home
Symptoms which are HARDER for people to recognize include:
- Changes to their thought process and how they are drawing conclusions about information
- Changes in motivation, behavior and mood
Some people have trouble recognizing psychosis because of religious or cultural beliefs. A skilled counselor can help sort out the difference.
2 Getting Support
- Family and friends are one of the most important things in helping us to regain wellness
- Ask someone you trust to help you through this process.
- Your family and friends will need support and education, just like you will.
- Encourage them to get educated at the same time that you're educating yourself.
- Give permission to doctors and counselors you work with to talk to the people you have chosen as supporters.
- Stay involved with other people- social interaction is important for recovery!
3 Staying Safe
- If you are upset, antsy or very energized, channel this into safe activities. Use words, not actions to express strong feelings.
- Know who to call. Carry their phone numbers with you and put it in several places around the house. (Crisis Contacts)
- Have a back-up plan: what happens if the first person doesn't answer.
- Anticipate what could happen and have a plan. Talk to a counselor about possible major stressors and things you should watch for. Identify things you can do to avoid a crisis.
- Include other people in your plan: family, friends, trusted professionals. Ask them to play a role, and make sure they have a copy of the plan.
- Consider completing an advanced directive. This is a legal document which explains what you do and don't want to have happen in case of a psychiatric emergency. Information about advanced directives can be found at the Disability Rights Oregon website: www.disabilityrightsoregon.org
- For more information on crisis planning, see the crisis resources section (Crisis Contacts)
4 Keeping an Open Mind
- When you have found a doctor or counselor you trust, share what are you experiencing and how you are interpreting it.
- Pay attention if other people are expressing concern about changes in your behavior or thinking. Often, other people are better able to observe changes in us than we are
- Listen to the interpretations of others you trust, and work together to come to a shared understanding
- Stay focused on the things that have always mattered to you- school, work, hobbies, relationships, etc.
5 Keeping Hope!
- Look for opportunities to meet other people who have been through the same thing and who are doing well
- Remember: you are not an illness! don't accept negative
assumptions about labels such as "psychosis", "schizophrenia" or
- Be around people who are positive toward you, and avoid being around people who act negatively toward you.
- Give yourself time to recover and give yourself credit for what you are able to do.
6 Take responsibility
- You are responsible for your own life! Others can offer support, but no one else can do this for you
- Use the resources and supports available to you.
- Listen, listen, listen.
- Ask questions and share your concerns.
- Write things down: keep track of what works, what doesn't work and why.
- Look for your own answers and share them with others.
- Set long-term and short-term goals.
- Take it one small step at a time. It's OK to rely on others.
- Most people need significant support from others during recovery, and sometimes need others to make decisions temporarily.
- Let others know what you need and want.
7 Know your rights
- to make informed decisions about your own treatment;
- to reasonable accommodations (adaptations) at work and school (for a good resource see: https://cpr.bu.edu/) and in your housing situation;
- to receive financial and health care assistance if you have a disabling condition which prevents you from working;
- to choose your own treatment;
- if your illness endangers your safety or that of others, you still have numerous rights, including due process and to be treated with respect;
- Family members may also have the right to take time off from work through the Family Medical Leave Act.
8 Choose the right treatment
Treatment for psychosis normally includes the following:
- Ongoing fine-tuning of the assessment and diagnosis
- Medications prescribed by a psychiatrist or psychiatric nurse
- Education about your condition, recovery process, rights and resources
- Counseling by a mental health professional to:
- help you adapt to the situation
- learn to manage the symptoms
- clarify and support progress toward your goals
- keep your self esteem
- Participation in groups with other people who have experienced a similar condition
- Assistance with financial, housing, relationships, school, work, and other areas which may have been affected by the psychosis
- Support for your family and friends
You and your team will develop a plan which identifies the goals most important to you, and how they will support you in getting there. Normally there is a written "treatment plan", which identifies what goals you are working, who is doing what, and when. If you don't know what's in your treatment plan, you should ask for a copy. The treatment plan should be based on your own goals.
Be sure to talk to the doctor about:
- How you will you know this medicine is working (what symptoms are you targeting)
- When during the day you should take the medicine
- What to do if you miss a dose
- How long it will take before you can expect to see improvement
- What side effects should you watch for, and what should you do if you experience them?
Psychosis brings many losses, and most people who experience it go through a grief process to heal from those losses. Predictable stages of grief include:
Denial, a time when you may be unwilling to acknowledge that there is anything wrong. It is common for people to withdraw from others during this stage.
Remember: don't accept negative assumptions or stigma. You are a unique, talented person with a lot to contribute. Whatever challenges or inconveniences you face, your contribution will be that much greater.
Anger- at yourself, others, the system. Talk about your feelings with someone you trust. Remember you are responsible for your own behavior. Choose not to blame.
Bargaining- Thinking if I just do this, things will be back to the way they were. If I just take my medicine, if I just pray, if I just work hard enough. The truth is, psychosis changes people's lives. With successful adaptation, the changes can be positive.
Depression- It's OK and natural to experience depression as part of the healing process from psychosis. It's just part of the process. It can be helpful to meet other people who have experienced psychosis who are leading successful lives. This will help you hold onto hope for a positive future. Also, talk to your doctor and counselor about these feelings.
Acceptance. Acceptance involves the acknowledgement that you are the person who has the "key to your own life." At this stage you begin to feel more compassion for others. It is the moment at which lasting recovery begins.
11 Educating yourself
There are many excellent self help resources, some of which are listed on this web site in the "links" section.
12 Setting goals and pacing yourself
13 Preventing relapse
Some good news:
Most of the time, it is possible to detect and prevent relapse either before it occurs or at the early stages.
The strategies which are successful in preventing relapse for psychosis are similar to strategies which prevent a whole range of other acute illnesses.
The same strategies which prevent relapse also lead to being healthier in general.
Psychosis is cyclical:
Psychosis and other conditions such as mood disorders tend to be cyclical. This means they go through predictable stages:
- The "well" stage either before the onset, or when symptoms are in remission or under control
- A "prodromal" stage when you are seeing early warning signs which are progressively becoming more severe (more intense, more frequent and lasting longer)
- An "acute" stage when you experience the most obvious symptoms of psychosis- hallucinations, delusions and/or thought disorder
- Early recovery when acute symptoms have gotten better and you are beginning to stabilize
- Late recovery when you are getting back to a "well" state- you may still have some persistent symptoms, especially issues with memory and concentration, but they are manageable and not getting worse.
- This same pattern applies to many chronic illnesses.
Psychosis is affected by stressors:
Everyone is vulnerable to psychosis, but some people can develop it more easily than others. People who are more vulnerable to psychosis need to be aware that there are things which can reduce that vulnerability (increase resilience), and there are things they can do to make themselves more vulnerable, which we refer to as "triggers".
Some things that can make psychosis worse ("triggers"):
- Not sleeping
- Living in a very stressful environment
- Interacting with people who are very critical or negative toward you
- Making too many demanding changes at once (moving out on your own while starting a full-time job, etc.)
- Extreme social isolation
- Using street drugs or alcohol
- Using large quantities of caffeine
- Not eating or drinking well
- Not moving your body enough
- Anniversaries of traumatic events
- Not taking medicine as prescribed
Things that can make psychosis better:
- Regulating sleep so you keep balance
- Avoiding substances which haven't been prescribed
- Taking the proper dose of prescribed antipsychotic medicines
- Staying involved with a supportive social network
- Identifying your most important needs and making sure they're met
- Setting and following through on manageable goals
- Having regular contact with a team of supportive professionals
- Staying active physically and mentally
- Keeping good nutrition and water intake
- Regularly doing things you enjoy
An effective relapse plan includes the following information:
- Daily practices which will help you stay well
- Triggers which may make you more vulnerable to relapse, and what you will do to reduce their impact
- Early warning signs indicating that you may be heading toward a psychosis, and what you will do if they occur
- Late warning signs that indicate you are in an acute stage, and what you will do, what others will do, and any other preferences or concerns you have (for example, if you have to go to the hospital are there certain medicines that work for you and others you want to avoid; if you are in respite temporarily, who will take care of your plants and pets, etc.)
Relapse plans should be re-visited regularly to make sure they are meaningful to you and complete. Everyone involved in your support system should have their own copy, and it is helpful for the local crisis team to also have a copy.
- You also have the right to turn your relapse plan into an advance directive. An advanced directive is a legal document which describes what you want to have happen in case things reach an acute stage where you're no longer able to make good decisions for yourself. For more information, visit the Disability Rights Oregon's website at www.disabilityrightsoregon.org in the "Mental Health Law" section, under "Declaration for Mental Health Treatment".
How to put together a relapse plan
With people who know you well and your mental health counselor and/or doctor, write down the following information, based on your previous experience:
A. What do you do on a daily basis to help you stay well?
B. When you have had previous experiences with psychosis, what led up to them?
Were there noticeable triggers?
What changes did you or others notice before the relapse happened?
What changes were noticeable first, and how did they progress?
Each person has their own early warning signs. You can get a good idea of what those are for you by re-thinking what happened before previous acute episodes. Quite often, early symptoms may start to occur weeks or even months before a full relapse. Common early signs include:
Growing confusion, depression, anxiety or irritability
Not coping with work or study
Avoiding social situations
Loss of energy or motivation
Feeling suspicious or paranoid
Unusual or bizarre beliefs
Hearing voices or seeing visions
Racing or obsessive thoughts
A significant reduction in ability to do ordinary things
When thinking about your early warning signs, be as specific as possible. Some other examples of unique early warning signs people have identified for themselves:
- Laughing frequently and out of context
- Taking baths more frequently
- Dreaming about spiders
- Painting on a larger canvas than usual
- Listening to specific music artists more often
- Beginning to think that other people are changing shapes
Next, think through what symptoms or changes you noticed in the later stages. Again, be as specific as possible.
C. In each stage, what did you do that seemed to help?
D. Think about your strengths and resources.
What resources are available to you (people, places, etc.)?
What have you done before that worked?
What helps you relax and feel better when you're stressed?
E. Now, think through how you will prevent and respond to symptoms:
What will you do on a day-to-day basis to help prevent unnecessary symptoms (stress management, balanced lifestyle, medicines, etc.)
How will you monitor symptoms?
Who else will help you monitor them?
What symptoms are you watching for?
What will you do if the symptoms occur?
Who will you call, when?
What will you do?
What do you WANT to happen if symptoms get worse (strategies that have worked before or that you think would work)
What do you NOT want to happen if symptoms get worse (strategies that have not been successful before- example: medicines which did not work well for you, bad experiences you don't want to repeat)
What's your back-up plan?
F. With your counselor, put your plan into a written format (preferably on computer disk so you can change it easily).
Periodically, look at the plan and think about what's working or not working, and what might need to be changed.
Make sure that everyone who plays a part in the plan has reviewed it and agreed to their role.
14 Coping with persistent symptoms
You may have certain low-level persistent symptoms even while you're on medicine;
You may experience flare-ups due to stress, illnesses or other factors;
In some cases medicine doesn't help specific symptoms.
It is important to know that the severity of your symptoms is not the most important predictor of your success. Motivation and previous experience are just as important. If you really want something in your life, you can learn to cope with symptoms in order to get there.
Symptoms are just that: they are symptoms. They do not prevent you from acting on your goals. How you react to symptoms is more important. For example, if you hear voices that tell you to do things, and you do what they say, it will probably get you in trouble in life. If you learn to ignore the voices and use your judgement, you will do much better.
There are specific skills which are helpful in learning how to cope with symptoms:
Relaxation skills. Symptoms are usually very stress-related, and if you learn to manage stress better, you will also learn to manage symptoms. Some things you can do to help manage stress:
Focus your energy on things you enjoy and that come easily
Engage in routine calm activity, such as reading, gardening, taking a bath
Keep a regular sleep schedule of at least 8 hours per day
Spend time with people who like you and have a positive attitude
Observation skills. By observing your own emotional state and symptoms, you can change how you react. Also, symptoms are often triggered by specific environmental phenomena (such as turning on a television or having an argument with someone), may occur at particular times of day, or may result from pushing yourself too far (working too many hours, staying up too late, dealing with too much environmental stimulation). You may be able to detect a pattern and develop new strategies for avoiding or reducing symptoms.
Reality testing. Psychosis is a disorder which interferes with information processing, so it is important to double-check perceptions with others. By exploring alternative explanations for things you experience which are distressing, you can learn to reduce the likelihood of drawing inaccurate conclusions. You can also learn to do this by yourself.
"Handholds to reality". Esso Leete refers to "handholds to reality;" things which you can do that keep you tuned into the world around you. Examples of this are regular conversation with others, using a calendar, having a daily routine and structure, having goals you're working on, and doing reality testing with another trusted person.
Keeping a peaceful, orderly environment. It's important to have a safe, comfortable place to live, preferably with others who you trust and who care about you. Environments which are very chaotic or where there is a lot of emotional expression may make symptoms worse.
Learning from others. There are many good self-help resources where people share what's worked for them in coping with specific symptoms. You may want to experiment with some of their ideas to see whether they work for you. In particular, Mary Ellen Copeland (Wellness Toolbox), Esso Leete (article: "How I Perceive and Manage My Illness)," and Fred Frese (http://www.fredfrese.com) have all identified specific strategies which have been helpful to them and others.