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Path to Recovery

"There’s definitely life after psychosis… You definitely can overcome it, if you just work hard enough and have the right support systems… It can be just the beginning of a new and enriched life…"
-Quote from an EAST graduate

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

Psychosis directly affects all of these things, but you can be successful if you have the right information, attitude and support. The following steps are based on the learning of others who have experienced psychosis.

Each person’s symptoms and recovery process are unique. However, there is much to learn from the experience of others. EAST attempts to summarize these experiences in order to increase the likelihood that each young person will succeed.

On this page:

1 Recognizing a Problem

The following checklist can help you decide whether you may be experiencing a condition needing attention. In some situations, others who are close to you may notice changes you don’t notice. If you’ve experienced any of the following for more than a few days, or if someone close to you has noticed these things, it’s worth having a good medical checkup:

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

Physical changes

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 Oregon Advocacy Center website, http://www.oradvocacy.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 “bipolar disorder”.
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

No matter how ill a person is, they have certain rights outlined by law. The Oregon Advocacy Center’s web site (www.oradvocacy.org) has an excellent description of those rights. Your rights include:

to make informed decisions about your own treatment;
to reasonable accommodations (adaptations) at work and school (for a good resource see: http://www.bu.edu/cpr/jobschool) and in your housing situation; (see http://store.bazelon.org/housing.html).
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

Once an assessment is complete, the doctor and counselor will be able to provide preliminary information about your diagnosis and what type of treatment is likely to be helpful. One of EAST’s goals is to support you in making your own informed treatment decisions.

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 the psychiatrist and counselor or “case manager” 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.

9 Medications

Most people who experience ongoing psychosis need to take medicine in order to manage the symptoms. Antipsychotic medications help restore the brain’s chemical balance. There are two general types of antipsychotics: Novel or atypical, and typical antipsychotics. "Typical" antipsychotcs are the older medicines. They tend to have more movement-related side effects, and are used less commonly than the "atypical" antipsychotics for that reason. Generally the prescriber will try to find a dose which is low enough to avoid significant side effects and high enough to affect the symptoms. It is very important to talk to the prescriber about any side effects or if you are thinking about reducing or changing medicines.

IMPORTANT NOTE: It may take as long as 8 weeks to see the full effect of antipsychotic medication. It is important to continue the medicine long enough to determine whether it is effective. Also, sometimes people will experience more severe side effects during the first two weeks, with the side effects going away soon thereafter. The prescriber may also prescribe an anti-anxiety agent, a mood stabilizer, or an anti-depressant.

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?

10 Adapting

Psychosis is a no-fault illness. Successful adaptation goes through a series of stages, which may be repeated and which may overlap.

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

Part of the process of moving forward is educating yourself about the things that affect you. That includes your specific medical condition/diagnosis and other things which relate to your specific goals. Your doctor and counselor will be a great source of information. You may also want to seek out a college counselor, vocational rehabilitation counselor, or others who have specific knowledge you need.

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

Know where you want to go, but take it one step at a time. Set small, specific short-term goals for yourself, then stay focused on them. Make changes gradually. Pat Risser, a long-time mental health advocate, uses the analogy of a ladder. You have been progressing through life for a long time, going from one rung to the other. When you experience psychosis, it’s like falling off the ladder. It takes some time to recover, and when you start to feel better again you may have a tendency to want to jump right back to where you are. But if you do that, there’s a good chance you will crash. You’re more likely to be successful if you take it slowly, one step at a time, and eventually you will find your way back to where you were and move beyond. Plus you will find that your new skills and experiences will be helpful to you in the future.

13 Preventing relapse

An important part of long-term recovery from psychosis is relapse planning. The more experience you have, the more sophisticated your self awareness becomes, and the more proactive you become in managing your own health.

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 advanced 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 Oregon Advocacy Center website at http://www.oradvocacy.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:

Not sleeping

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.

Personal Relapse Avoidance Plan (A form for you to print)

14 Coping with persistent symptoms

While medicine and lifestyle strategies usually greatly reduce or eliminate symptoms, symptoms may persist:

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:

Exercise regularly

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 (see http://www.mentalhealthrecovery.com , particularly “wellness toolbox” materials), Esso Leete article [link to article reprinted by permission], and Fred Frese (http://www.fredfrese.com ) have all identified specific strategies which have been helpful to them and others.
Esso Leete Article(PDF)

15 Giving back to others

Many people find that when they have begun to achieve a solid recovery, an important part of their recovery process is to give to others. There are many ways to do this- to share your experiences in person or writing, to co-facilitate a support group, to volunteer your time in the community, or just to be a little kinder to people you know. EAST tries to create opportunities to give back by giving feedback, public speaking, mentoring, being on oversight groups and committees, and helping in designing and developing the program.