I Have Schizophrenia: How What You See is Experienced by Me.
The following list is based on what we see in people with schizophrenia and schizoaffective disorder told from a first person perspective.
Maybe it helps to have a glimpse of the inner reasoning behind behaviors we find hard to understand. It’s not a technical/diagnostic list. It’s a way to connect with each other.
It’s based on our years of love reaching beyond the barriers of schizophrenia. Schizophrenia doesn’t go away. The goal for recovery is to manage symptoms so a person’s intelligence, personality and natural strengths and talents can shine.
My Symptoms of Schizophrenia: How What You See Looks and is Experienced by Me
Paranoia: I feel great anxiety about the police and other authority figures. I feel family members, friends and others talk about, criticize, and strategize together against me. I feel others are angry with me and want to persecute me.
Hyper-sensitivity: I am mentally, emotionally, and physically overwhelmed when I feel stress.
Triggers: Certain people, crowds, events, memories of past traumas, over-stimulation in my environment, expectations of others, anxiety that something will happen to my possessions, feeling I am going to be hurt and there is no escape, are some of the things that can cause me to escalate and become emotionally explosive.
Poor Hygiene: I don’t think about it and when I do I don’t have the energy or motivation to bathe or take care of my physical appearance.
Poor nutrition: I obsess about my food. I have food rituals and beliefs about what I can and cannot eat based on what I believe about my body and specific foods. The foods I am willing to eat are few and I eat them when I feel the urge rather than by schedule.
Lack of dental and medical care: I don’t think about going to the doctor. I can’t afford it and anyway I don’t realize when my aches and pains or physical discomfort warrant medical attention. I believe I know what my body needs and can take care of it myself. I feel anxiety when I have to make an appointment, go to a doctor’s office, talk to a doctor. When I talk to the doctor I can’t remember the concerns I had or questions I wanted to ask. I don’t receive the care I need because I have trouble communicating with my medical providers.
Simplified life: I’ve given a lot of my stuff away. The less the better. I don’t need it and I can focus on the few possessions I have. What I own can basically fit in my room. And these things are very important to me. I have my own beliefs about how I need to take care of my possessions and I’m responsible and conscientious based on those beliefs. I become anxious and agitated when others tell me I should take care of my possessions in another way.
What possessions are important to me changes. So as possessions become less important others take their place. I weed out and categorize, give away and throw away. I like to wheel and deal, selling and buying, and high grading other people’s cast offs/trash.
I take pride in finding uses or extending the use of things other people throw away.
I express some of my creativity in the possessions I choose, how I arrange and exhibit them and how I add to and change out old and new things in my cache.
My car is important to me. It is a statement of my independence, my ability to be mobile, to come and go, to have a sure place that’s all my own. I take pride in my car (regardless of the condition others see it in), and I love the freedom that comes with driving. Sometimes I drive just to regroup and calm down. I may put a lot of miles on my car and then not drive for a long time. But even when I’m not driving I still know my car is there waiting for me. Sometimes I just go out and sit in my car and I feel more grounded.
Relationships: I have withdrawn from most of my relationships. It’s hard being around people because I am preoccupied with my thoughts and I get overstimulated. I hyper-focus on a few relationships I have that make me feel better about myself. My family doesn’t usually approve of these relationships because of the bad influence they supposedly have on me. I feel resentful when my family tries to control my relationships. They want to protect me but they don’t know how hard it is for me to make and keep new relationships. I want to feel good about relationships that aren’t focused on conflict about how I don’t measure up. I want friends just like everybody else.
Illogical reasoning: I believe passionately that I know things others don’t know about myself and the world around me. I base what I know on my inner thoughts. I try to avoid input from others and from the world—it’s too overstimulating. I argue with others when they disagree about what’s best for me because I know and understand myself better than they do. Especially when I’m paranoid, I feel others are trying to control me with what they think. And sometimes I believe they want to harm me.
Talking without making sense: My thoughts may be fragmented or loosely connected. I get frustrated when people act like they don’t understand me. I believe I make perfect sense and they don’t want or try to understand what I know and what I am trying to tell them.
I talk to myself: It may make just enough sense that people think I’m talking to them and/or listen and try to figure out what I’m talking about. I just talk to myself working out my thoughts and figuring out what I need to be doing, sometimes I feel soothed saying certain words or phrases over and over again. It can help me feel I am in control. I easily become stressed if I’m interrupted or questioned when I’m talking to myself—I’m minding my own business so shouldn’t you mind yours?
Restlessness, pacing: I become intensely agitated or restless. I can’t stop moving. I pace. I tap things or play with them. It’s hard for me to sit in one place. A lot of the time I talk to myself when I pace. I don’t expect (or want) others to focus on me or tell me to sit down when I need to move.
Strange physical movements and gestures: My body does things because of neurological differences from other people. My movements or gestures may not mean anything, or they be my way of trying to express something I’m trying to say.
Battered environment: Damage to (mostly my own) property from throwing, hitting, tearing, scratching and breaking objects when I am frustrated or angry (mostly at myself). I sometimes damage things because I forget to take care of them or don’t understand how they work and try to figure it out. I have trouble with keeping my environment in order because of my problems with thinking and processing information. I start a task and stop, sometimes I forget or I may not even be aware the task needs to be done even when it seems obvious to everyone else I just don’t see it. I may know something needs to be done but I don’t have the ability to make myself do it. So my environment may be cluttered, messy, disorganized, dirty, or worse.
Lack of awareness of dysfunction: One of the traits of my illness is “anosognosia” which means I am not aware that I am ill, or different, or behaving in a way that affects the people or behaving in a way that affects the people around me.
Lack of awareness of needs of others or how others are affected by my behavior: A lot of times I try to do what I think will be less distracting or irritating to others but I get it wrong and they are annoyed or angry. I am hypersensitive/intuitive so I pick up all the moods and emotions of others around me. I can’t differentiate or interpret what I’m intuiting so I think people don’t like me, want me, or understand me. I try to reach out and they are frustrated or irritated and I don’t understand why.
Flat affect—showing no emotions: There are times when I feel blank, empty. I may withdraw and sleep for days or sit outside and stare into space and smoke. I may not hear others talking to me and I am totally disconnected. I ignore people not to be rude but because my brain seems to be hibernating.
Short-term memory loss: I have clear memories of the past, before I became ill. But I struggle with memory of recent events and circumstances. This is partly why I can’t connect actions, choices, judgments, promises, agreements to results/consequences.
I likely smoke and drink coffee and caffeinated drinks/pills. I may now or in the past have used alcohol, street and prescription drugs to self-medicate. Tobacco and caffeine actually really help me have some focus.
Legal problems: I may be profiled by police (because of my appearance or behaviors), make poor choices, lack judgment, have poor boundaries, or become involved with people in trouble with the law. I’m not a criminal, I sometimes don’t realize why something I’ve done causes others to feel concerned, cautious or even afraid of me. I’m not physically violent. I am more likely to hurt myself or be hurt by someone else. I am vulnerable and can be victimized because I don’t realize I am at risk or in danger of being harmed.
Education and employment deficiencies: My grades in school didn’t show my abilities. I may or may not have graduated from high school or gone to college. I may have had frequent job changes and periods of unemployment, or I may not be able to work at all. This is hard for me and for others to understand because of my intelligence and experiences in the past that I have succeeded in. Why can’t I excel now, even worse, why can’t I manage even tasks/responsibilities that everyone else can with little effor?. But I struggle with normal daily functioning due to the many areas my brain affected by schizophrenia. My problems with memory and thinking, my lack of awareness, poor judgment, feeling easily overwhelmed, paranoia and need for minimal social stimulation are obstacles to my work. I may have been successful in the past, a hard worker with a lot of responsibility. But as my illness emerged I lost my ability to function as I used to. I am intelligent and when I’m stable it may seem I should be able to work. But an important part of why I can be stable is that I don’t have to deal with the stress of employment.
Note: People with schizophrenia have different abilities depending on the severity of their illness. Some can work while others cannot. Due to stress those who do work are often employed with a lower level of responsibility and mental challenge than their intelligence or job history would indicate.
Lack of ability to feel anticipation, happiness, contentment, sense of future: I wish I could feel these things! Without them it’s hard to be interested, motivated and able to sustain involvement or interests even in the simplist goals. This is one of biggest challenges for me and others in dealing with my disease. People think I choose to be lazy and checked out. I feel embarrassed and ashamed because they don’t understand my brain.
Similarities to other mental illnesses: PTSD, Adhd, depression, bipolar, addictions, eating disorders, personality disorders: all share symptoms with schizophrenia—maybe because schizophrenia affects those same parts of the brain. In any case my illness is throughout the brain the others are not.
Strained relationships: people don’t understand me. They think I’m angry when I’m frustrated and confused, they think I hate them and want to hurt them when I hate myself and want to hurt me. My anxiety makes communication difficult, I become insistent or may seem stubborn and unwilling to listen. I withdraw, I don’t realize I have intruded into other people’s space or thoughts, I am self-protective and paranoid.
Lack of follow through: I become passionate about something and jump in. People think I’ve changed, some think I’m not ill. I feel good about myself and deny my illness. I can’t sustain and crash then I feel devastated and judged as incompetent and uncaring.
Strange focus: I focus on things that make sense to me. My beliefs, perceptions, attitudes and personal interests may seem impractical, child-like, grandiose, and/or simply out of touch with reality. I become obsessed by things that help me feel revved up—a certain relationship, cause, hobby, past experience. Even when it doesn’t make sense why to anyone else, these things help me feel connected to the world for the time I am able to sustain them.
Explosive anger: When I am overwhelmed by anxiety I escalate and emotionally explode. I’m almost never angry, I’m confused, frustrated, I feel shut out and not understood. My emotions aren’t violent. I feel helpless when I can’t express myself so others can understand me. I want people to help me not feel they have to defend themselves from me.