Independence and Relationships With Schizophrenia

The Challenges

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Living with Schizophrenia. Nick Dolding / Getty Images

Schizophrenia is a chronic disease. The symptoms of schizophrenia affect many of your thoughts, feelings, and behaviors. The severity of these symptoms can fluctuate, and even someone who is quite ill can sometimes feel and appear normal, even without medication. This remission of symptoms does not mean the illness has gone away.

Modern antipsychotic medications greatly reduce both the severity of your symptoms and the amount of time you spend experiencing active symptoms.

Nevertheless, you should plan for times of remission and times of relapse. Even in remission, your residual symptoms (the symptoms you continue to have even when you’re relatively well) will effect all aspects of your life.

Your illness probably means that you’ll need more support than most people. It’s important for you, with the help of your doctor, social workers, and loved ones, to figure out what kinds of supports you need, and then put those supports in place. Depending on the severity of your illness, you may have trouble with important skills, like:

  • Focusing and maintaining attention
  • Remembering appointments, meetings, or past conversations
  • Having energy and motivation to do normal activities
  • Feeling hopeful or optimistic to try or do new things
  • Perceiving and interpreting social cues and facial expressions accurately
  • Engaging in conversation in ways that other people expect
  • Behaving socially in ways that other people expect
  • Overcoming social shyness and fear of being rejected

It’s very important for you to plan ahead, when you feel relatively well, for times when you may start to become ill again. Schizophrenia makes it difficult for you to recognize signs of illness in yourself, so you’ll need to rely on feedback from other people that your behavior is changing.

People you can ask to watch for changes include:

  • People who live with you
  • Doctors or social workers you see regularly
  • People who work with you or go to school with you
  • Family members

When you decide who can look out for you, give them your doctor’s phone number, and also give your doctor a list of the people who may call about you. Your doctor or social worker will not give anyone information about you (your rights to privacy are protected by strong federal laws), but they can listen to the information that these people provide.

Educate these people around what kinds of changes to look for. Because you may have trouble with some of these areas even when you’re relatively healthy, they should watch for changes in your behavior. For example, you may continue to hear voices even when well, but usually understand that they aren’t real; however, you want your helpers to call your doctor if they notice you begin to talk back to the voices or to be upset by them.

Important changes might include:

  • Having a harder time getting up in the morning
  • Being late to work or school
  • Seeming more spacy or easily distracted than normal
  • Seeming less happy, or less emotional in general
  • Seeming more irritable or agitated
  • Memory worse than usual, or having more difficulty with mental tasks like arithmetic
  • Becoming more reactive to hallucinations
  • Talking obsessively about a topic that seems strange or delusional

If you seek help from you doctor or social worker as soon as these changes occur, a temporary change in medication can prevent a full-blown relapse. Often, you’ll be able to go back to the previous dose after the crisis has passed, or your doctor may change your medications to something that will work better for you.

Independent Living

Everyone, including people without mental illness, needs some help to keep up with the complex tasks of daily life. For example, most people have to use calendars, date books or smartphones to help them remember appointments and keep track of things they need to do. Some people rely on a spouse to pick out their clothes for them or to help them remember chores. There’s no right answer to how much help a person “should” need.

Independent living for someone with schizophrenia involves a number of definite skills. Social workers call these activities of daily living or ADLs. Skills a person might need to improve can include:

  • Taking the correct medications at the right time each day without help
  • Personal hygiene: bathing, washing hair, brushing teeth, trimming finger and toenails, wearing clean clothes
  • Washing and putting away clothes and sheets
  • Making the bed, changing sheets when needed
  • Preparing healthy meals and eating regularly
  • Washing and putting away dishes after meals
  • Cleaning chores: kitchen, bathroom, living areas
  • Grocery shopping
  • Managing money and sticking to a budget
  • Using public transportation
  • If incontinence is a problem, independent living requires remembering to use the toilet often, and to change adult diapers when they get dirty

You might want to make a chart with three columns. On the left, list each of the skills you’ll need to live independently.

In the middle column, write how well you currently handle that skill (always do it well, sometimes need help, can only do it with considerable help, not able to be involved in that skill at all). In the right column, write your goal for that activity. This will be most helpful if you set a goal that you think you can achieve with some work and help, so you don’t become discouraged.

Once you decide on your goals, get the help of your support team to reach your goals. It’s important that people who are part of your plan agree to their roles. You may need to negotiate and compromise.

For example, you may want to start using the public bus system to go to school, but your mother may feel you’re not ready. A compromise might be for you to begin by using a more limited transportation system for people with disabilities. When you have mastered that system you can learn specific routes on the public system, accompanied by someone else.

Social Relationships

Almost everyone desires social and emotional connections with others. Schizophrenia is an isolating illness, especially when your active symptoms make you see, hear and believe things that no one else shares. Even when you’re not experiencing psychotic symptoms, though, your residual symptoms and passive symptoms can make social interactions more difficult.

A good first step is to figure out your goals. Do you want to spend more time doing activities with other people?

Do you want to get better at talking with new people you meet? Would you like to go on dates?

Once you know what you want, figure out what specific changes you need to make in order to achieve your social goals. Making lists and talking with your support team will help you clarify your situation and make a plan.

Here are some concrete steps you can take to improve your social situation:

  • Join consumer self-help groups, where you’ll meet other people who understand and share the same challenges you do. You’ll learn strategies that work for other people, and be able to practice your social skills in a non-judgmental atmosphere. You’ll also learn about resources and opportunities for people with schizophrenia that you might not otherwise find.
  • Ask your loved ones, counselors, and close friends for feedback and help to improve your social skills.
  • Good community housing can provide social and group recreational opportunities. It’s important to shop carefully for a living situation that provides high-quality care and a safe, friendly environment.
  • Participate in social skills training. You might find this through your mental health services team or through a consumer group.
  • Dating and friend matching services for people with psychiatric illnesses are available in some areas. Ask your consumer self-help group for suggestions.

You can also use regular online dating services. Interacting through the computer avoids many of the communication issues that make it difficult for you to meet new people face to face. It’s important to be honest with people about your disability. Mentioning it briefly in your online profile avoids awkwardness later on, and makes it easy for someone to ask you about it if they’re interested.

NAMI, the National Alliance on Mental Illness, is one of the largest consumer self-help organizations for the mentally ill and their families. Through their website you can find a group in your area, and start making connections.

Sources:

Meuser, K. and Gingerich, S. The Complete Family Guide to Schizophrenia New York: The Guilford Press, 2006.

Torrey, E.F. (2006) Surviving Schizophrenia: a Manual for Families, Patients, and Providers, 5th Edition. New York: HarperCollins Publishers.

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