7

WHAT WILL PEOPLE THINK OF ME NOW?

It is not easy to know how people will react to your illness. There is a stigma related to schizophrenia based on common stereotypes of people with schizophrenia as frightening, dangerous, and different. Like all stereotypes, these are based on ignorance and generalizations.

So how do you handle the worry about what people may be thinking of you? First, think about your own preconceptions regarding people with schizophrenia. What did you think before you were sick? Most of the people writing this book had their own mistaken ideas about this illness.

 

ZELDA

ZELDA: If you have to put a clear label on it, it’s schizophrenia. But I don’t side strongly with labels and classifications, as they try to fit things into boxes. Doctors and therapists asked me way back when if I felt comfortable with that “diagnosis,” and I answered, “That’s fine.”

ILAN: I think the biggest problem in the beginning was admitting to old friends, even old friends I knew I could trust, what was wrong. I wouldn’t tell anybody that I had a mental illness and that I had spent time in a mental hospital.

 

ILAN

I had recently returned from a year of study in Israel. I started school and had a very successful semester. I was on a high until I lost a peer I had known from elementary school. Over the summer I lost two more people. I wasn’t ready to tackle school again. I broke down in the emergency room completely. I woke up some time after and they said, “You had a nervous breakdown.” I was in complete denial. I was sure if they let me out of the locked door I could handle myself just fine.

Some time thereafter my father took me for a haircut and I still couldn’t pull myself together. I needed my father to do a lot of the talking. After my first visit home I realized that something was very wrong. I spent the day in bed. I couldn’t sit long enough to eat a bowl of cornflakes. I thought I could spend time with my grandmother, who was a favorite of mine, but I couldn’t focus. I just wanted to lie down.

I don’t think I had a good understanding of what schizophrenia was before I came to the hospital. The little that I knew about it was what I saw on TV. I carried with me all of the stereotypes of mental illness. One of the things I had in mind was that once you have schizophrenia you stay sick. You don’t come out of the hospital for the rest of your life. I always passed Creedmore on the street when we would go somewhere. I knew it was a mental institution, and it really did look quite final, the bars on the windows and doors that you never saw anybody go into or anybody go out of. And many of the talk shows project people with schizophrenia as having multiple personalities. That misconception along with the others is what I brought with me.

I remember conversations with several friends who didn’t know about my illness. I would tell them what happened and I would say, “Are you still my friend?” Most of the time they did stay my friends. I was looking for a job, and I would take anything I thought I might qualify for. Many of the schools would take people without licenses [as teachers]. So I went to this private school and the man was very happy with my credentials. But once I told him that I have schizophrenia, that was it. I called and called. So I just can’t tell anybody if I want the job. I would be careful whom you tell what kind of insurance you have, because people will know that if you have this kind of insurance you are disabled. Especially if the illness is invisible, you don’t need to share it with anybody, especially at a job. You want to get by looking as normal as possible. The whole world carries within them the stigma of schizophrenia and they will stigmatize you. People who have a stigma didn’t put it on themselves. It was put on them.

MYTHS, LABELS, AND STEREOTYPES

The stigma of schizophrenia makes it difficult for those with the illness to live openly, to get support, or to apply for school or work. Because most people do not understand schizophrenia, they think about the illness in terms of stereotypes. Common stereotypes depict people with schizophrenia as retarded, drug addicted, homeless, dangerous, crazy, evil, not “normal,” bad, weak, different, or having multiple personalities. These labels are hard to live with especially because they are no more true for people with schizophrenia than for other people. In the face of these stereotypes, people with schizophrenia have a lot of questions: How can I go on with my life? How can I tell my family and friends? How can I go to school or work?

DEALING WITH PREJUDICES AND STEREOTYPES

Step 1—Learn all you can about schizophrenia.

Step 2—Put the feelings of shame behind you.

Step 3—Surround yourself with strong supports such as family, good friends, group members, counselors, and doctors.

Step 4—Decide for yourself whom you want to tell (friends or family) and whom you need to tell (doctors, school administrators, and employers).

Step 5—Work toward staying well.

Remember, you are not schizophrenic! This is not an identity. You have a disease called schizophrenia.

LUCINDA: Before I got sick I thought schizophrenia was a change in personality, multiple personalities. I know I read it somewhere. I wonder why so many people think it’s that? I heard it or read it somewhere. I didn’t come to the conclusion that schizophrenia is multiple personality disorder on my own.

LAURIE: I didn’t have any idea schizophrenia existed. I just thought retarded people were the only ones who got sick. I used to be afraid of them, that they would hurt me. I feel safer now that I know what is going on.

BUDDY: I thought schizophrenia was a disorder where a person would have multiple, split personalities, like five or ten different personalities. I was completely wrong about that.

GENEVIVE: At first I thought schizophrenia referred to people with split personalities or people who were catatonic, in a state where they can’t talk. I thought you had to do something that is destructive to be mentally ill. Before my brother got sick I thought it was a homeless person’s illness, being on drugs. But then when my brother got sick I realized it’s not just people out on the street. It happens to normal people. My brother jumped out the window to try to kill himself. People get sick. It’s just that I have this illness. My brother is mentally ill, so I know now that it could be hereditary. And my sister was ill. She saw a psychiatrist for a while and then she stopped.

AUDREY: I think I used to think schizophrenia meant a split personality because of the Greek or Latin root of the word. It means “split mind.” Actually it doesn’t mean split mind, but it translates that way.

JOSEPH: I think a huge misconception about mental illness is in the labeling. When somebody says they have schizophrenia or they are manic-depressive, people in general think they are the most evil people to exist. But if you think about it, people who have mental illness can accomplish just as much as, if not more than, a “normal” person, because I honestly believe that nobody is truly, absolutely normal.

GARY: Before I got sick I thought schizophrenia meant, vaguely, a crazy person. I was never aware that this was a legitimate physical illness.

BEN: I didn’t know about schizophrenia. I learned in health class people usually think schizophrenia is split personality, but it’s not. That’s all I remember.

LUCINDA: Of course there is a stigma. People just think you are crazy and you are somebody they shouldn’t get to know because of fear. They just fear for themselves that you might turn around and do something. I know even myself, before I was diagnosed, I would look at a person with mental illness as different. I probably wouldn’t want to know them. I would be afraid of them because they are just not all there. Now I think differently. I think it could happen to anybody, anytime. I think of people with mental illness as the same as anybody else.

STIGMA AND SCHIZOPHRENIA

AUDREY: In the beginning I was very confused. I knew something was wrong, but I couldn’t answer the questions and I was ashamed at what was happening. It was very scary and I felt very alone. I felt that I was the only person on earth with the problems I had. And I hid it so that it was even harder for anyone to figure out what it was. I became more and more depressed and finally became so depressed that I was psychotic. I didn’t eat. I lost my appetite. I think it was my way of showing outwardly that I was in pain. I got to the point where my mother had to dress me, bathe me, put clothes on me, and help me to eat. It wasn’t until then that my parents had to own up to the fact that I was sick. Out of desperation they took me to the hospital.

BEN: Stigma and any type of bias or stereotype stem from lack of knowledge. When people don’t know enough about these illnesses, they think all these bad things. I am from an Asian family. They view mental illness as cancer. They shun the whole idea. They just deny. “That can’t be happening to my kids.” Asian families take it harder. They are not as liberal. Asian people think of people with mental illness as killers. A lot of stuff doesn’t make sense, but that bad people thing is attached to mental illness. It’s not true.

PATRICK: When I first got sick I thought schizophrenia was just a name with a lot of letters in it. Society thinks that anybody who has it is crazy. People don’t want to talk about it. They feel ashamed of it. Once in a while I feel that way, but being around people and being on the medication lift the cloud.

GARY: Stigma plays a big part in my life. Because of the stigma I am always concealing my illness. I had a good two years removed from my life. There is a gap in my employment and school history I am always thinking how to cover up. Sometimes I have to lie and say that I have been working, say that I took a few semesters off. I won’t say why, just that I didn’t know what I wanted to do and took a few years off. Only four of my closest friends know I had the illness, and sometimes I don’t even tell them about seeing my therapist and psychiatrist. I know they’ll accept me, but that’s how powerful the stigma of schizophrenia is. When people think about schizophrenia they don’t think it’s a serious illness like cancer or AIDS. They think that people are just crazy. I don’t blame them; I used to think the same. As a result of the stigma I can’t be open about my life.

JAMES: When I got out of the hospital I saw a couple of shows and the way they hyped up schizophrenia wasn’t half of what I had seen. But they showed people who were criminals. There was one that I saw that I related to in the movies. The hype is true in a way. It has to be true because there are hospitals and institutions researching the problem of schizophrenia. I am not a criminal, a bad guy. I met a lot of people that are real good. Everybody I’ve met in this hospital is really nice.

WHOM TO TELL

It can be very frightening to think about looking for a job and having to disclose information about your illness to potential employers. The law regarding disclosure is a federal law (Americans with Disabilities Act), which means it applies to all fifty states plus Puerto Rico.

As a rule, employers are not allowed to ask you if you have a history of mental illness when you apply for a job. There are some special jobs, such as law enforcement and armed service positions, where employers are allowed to ask about psychiatric illnesses and medications. In those cases they must ask every applicant. If a physical or psychiatric test is required for the job, it must be given to everyone applying for it and jobs similar to it. Employers may ask you about substance abuse, but not about legitimate use of prescription drugs.

Once you are hired you may disclose your illness in order to get what are known as reasonable accommodations. These include a flexible schedule so you can see your doctor or counselor, a special office setup to help with your concentration, and even a job coach if you need one. You may not be fired for making this disclosure, although employers do have the right to ask for evidence of your disability in writing. Employers must keep documentation of your illness in separate, confidential files, and they may not allow this information to become known to your fellow workers. Remember, if you need special accommodations because of your illness, you must ask for them through your supervisor or the personnel department.

Schools also must provide reasonable accommodations and may not ask you about your illness when you apply. Again, to get accommodations you must ask for them, usually through the Dean of Students. All of these rights are part of a recent ruling based on the Americans with Disabilities Act of 1990. If you think you have been treated unfairly, contact the Equal Employment Opportunity Commission at 1–800–669–4000 or tell your counselor. There also may be state laws that protect you. Usually the phone numbers for state offices are found in the state government section of your phone book.

AUDREY: It takes some strength and some time to completely recover. I found that it was very difficult for me to function in social situations. I felt as though I were walking around with two heads. And that everybody knew that I was crazy. The hardest thing that I experienced in high school was that because my friends could not handle my being sick, they abandoned me. Now I was completely alone and felt extremely alienated.

My peers stigmatized me in high school to the extent that I was completely outcast. I had never been so hurt. That year I felt so alienated by my classmates that I moved in with relatives out west and graduated from high school there. I was admitted to college out there with a scholarship. From my experience I’ve learned that the illness is only a small part of who I am, and it is not necessary to inform everyone about it.

SAMANTHA: I’m still so new with dealing with the stigma that when I apply for and get jobs and go to work I don’t know if I should tell them I have a mental illness. I’m nervous because I’m expected to do the same job as any other person. There is stigma to worry about when I go to dance classes and I’m making friends and people want to know why my daughter is not living with me. I don’t say very much about it because of the stigma and misunderstanding people have about it. So I really haven’t been very open outside my family about it.

ZELDA: The word schizophrenic definitely carries a stigma. I really haven’t had firsthand experience, but I know I don’t share that with everyone I know. Like, my boss doesn’t have any idea that happened. If I had asthma or something of that nature, it wouldn’t be a big deal. Before I got sick I thought this disease was multiple personality disorder. I saw Sybil and thought she had schizophrenia.

BETH: All my friends and family were very supportive. My friends were shocked. The guy I was dating said, “Whoa.” He didn’t know what to think. But when I went back to school they all knew about mental illness. I wound up giving a speech in my class. Nobody looked at me differently at all. I think everybody was very cool with it. I never lost any friends. But I’m afraid to tell people. I hear all the time people making fun of crazy people, and I say, “You don’t know what you are talking about.” That bothers me. Because of the stigma I just tell people I am close with and people I need to tell. In my field I probably could tell people because they know about schizophrenia. But I don’t tell them; it’s just better, unless something happened and my symptoms started.

JOSEPH: To tell a new friend, somebody I just met, I feel a little embarrassed, stressed a little. But when I think about it there is nothing really to be embarrassed about. If the person can’t understand that I had an episode, then he’s not my friend. Try to keep it to yourself as much as possible. If you feel someone should know because it is a part of you and you really want that person to know you, by all means tell him. If you don’t feel someone should know, a job, acquaintance, by all means don’t tell.

JACKIE: I was a little worried about the stigma, so I only told a few close friends.My mother had told the whole family. I realized that nobody treated me differently. My aunt didn’t want to face it and didn’t want to talk about it, but I didn’t have any problems.

Usually when I tell people what I have I explain to them what it is. When I tell people about my schizophrenia I don’t just tell them that I have schizophrenia. I tell them what it is because most people don’t know. Tell only close friends. I don’t feel it’s necessary to tell employers. I told my boyfriends.

ROMAN: My band member is bipolar. He told me, “I have a whole bunch of schizophrenic friends, don’t I.” I tell only certain people—my close friends, that’s about it. For the job I won’t tell them about the illness. It’s not a real stressful job. They might think that because I have a disability I might not be able to perform the job.

MIKE: I was concerned that people would look at me differently. But nobody really treated me differently. They were still nice, cool. My friends stayed the same. I would recommend that people tell their family, definitely doctors, social workers, people who can really help you.

I wouldn’t recommend telling your friends right away because you don’t know what type of response you are going to get and you want people who are really going to support you. Relatives, close people. That’s about it. I would just go for a job; I wouldn’t mention my disability. As far as school, I would let them know because this has to do with my mind and concentration. I would let them know so they could provide whatever they could to help me. And I know that they have programs at the college I applied to, so I would recommend telling your school.

GENEVIVE: I was afraid to let people know I have schizophrenia. I thought, this is not something that you talk about and tell friends, because people are going to treat you differently, look at you differently. They are going to think you are going to do something bad. Especially because on TV when somebody commits a crime, they often say that the person is mentally ill. People think when you are mentally ill you are going to do something bad. If you want to discuss it, wait until you are well and good so you can really convince the person you are not what society thinks you are. Wait until you get better. Then you can explain to people if you want to. Only my family knows.

After I got out of the hospital, that’s when my mother told a couple of her friends. It was okay because they are close friends. I knew they knew about my brother and they knew I wasn’t going to commit a crime. At first, when I was still having symptoms, I didn’t want her to tell anyone. No friends of mine know I am mentally ill. At first I didn’t want people to know, but my counselor told me to go to the disabilities counselors in the college. I got tutoring. I have a counselor to talk to if I have a problem and they help me with choosing my classes. I get first choice of classes. I get to have extra time taking my test. I don’t know how I would do if I didn’t have that program.

BUDDY: I don’t really tell people that I have schizophrenia, that I see a psychiatrist, or that I have a social worker. I’m afraid they might see me in a different light, like I’m crazy or something. I haven’t told my girlfriend. I told her I was depressed in high school. I think she would understand because her best friend’s mother has schizophrenia. I’ve only told the friends who came to see me in the hospital, and they don’t know what I have. I keep it confidential, and I don’t think it is really important for them to know, unless they see changes in my behavior, which I really doubt. I don’t think you should tell any job because I think it might ruin your chances. The employer who is doing the interview might not have an understanding of the disease schizophrenia and he might be ignorant. He might not want to give you the opportunity because he is afraid of that word.

JAMES: I think you should tell your boss, your immediate family, and your friends. You tell them certain symptoms so they’ll tell you if they notice you are getting sick again. Don’t tell anybody when you first meet. The other person will think they have to deal with you and your problem. A couple of times I did and they never really asked me any questions about it. A few females I told, but then the relationship didn’t go too far. I told one guy in a joking way. He joked about it, “Well, now we have another crazy person employed here with us.”

SHARON: My sister always teases me. When I speak to her she tells me I’m lucky because I have Medicaid. Some people treat you differently. They don’t act the same with you. They single you out from everybody else. I don’t know what they think. I think they would rather not be bothered because they don’t understand. I remember when I went to church while I was still very medicated. I went to the bathroom and they were looking at me funny. They think God can cure you, can take it away from you.

ABBY: I don’t mind explaining to someone in my group or the doctors about my illness, but it depends on who. People might not think you are in your right mind, and fewer people will talk to you. If I were to go somewhere socializing and I were to say, “Excuse me, I have a mental illness,” they would say, “She is not right.” They might think I need to be in the hospital. I try to avoid telling people. I don’t tell people I am in the day program. People might treat you differently; they might not even know how to act. They might say to themselves, “I have to be careful.” They might think you are a very weak person.

JEFF: You shouldn’t tell the people you work with.I found that out. They label you as a nut job. They tease you. They treat it like it’s a joke when it really isn’t. It’s really pretty serious. You should tell your family, people you are close to. People like that you can tell. I told one friend, but he was scared to visit me. People have bad stereotypes. My brother’s friends came by, and that was nice that they visited me.

ALEXIS: I feel people should be more educated about the illness before they make judgments. You have to be selective whom you tell, because a lot of people will judge you even if you are capable of doing a good job. People are ignorant and people can be cruel. Even if they have known you for many years as a highly functional person and would never guess that you had any mental illness, if they did find out they could, unfortunately, change their opinion of you. For example, I told my boyfriend only because we had the intention of getting married. Otherwise I wouldn’t have been so free to give the information away. I was scared about telling him because I thought there was a good chance he would break up with me. I was prepared to deal with it. But he was very accepting and understanding. He had a lot of questions, but he still wants to marry me, and even though he knows it’s hereditary he still wants to have a family.

When I did tell him I felt like an anchor had been lifted and there were no more secrets. I couldn’t lead a life with him hiding that. Sooner or later he would have found out, and that could have caused a divorce or something terrible. Still, I’m ashamed to tell my boyfriend about the hospital because people stigmatize. I feel maybe it’s worse if someone goes into the hospital. When people hear about a psychiatric hospital they think you’re off the wall, violent. At my first hospital people were violent. I was scared there. I am afraid he will think of me as very sick, in a very unstable light if I tell him about the hospital.

BUCK: Nobody knows I am sick. Only my family knows because I think people would look at me in a different way. Like some sort of crazy person, like any minute I could go and do something out of the normal. Maybe fight. Something in my mind would click and I would do something bad.

VAN: I’d be very careful whom you tell what happened. Make sure you tell family members you trust and only friends you really trust. Don’t let anyone know you are on medication.

ALEXANDRA: My family knows and so does my boyfriend. I think you should tell your parents about your illness and your friends if they ask you what happened. I won’t just tell anybody because I think they might look at you different.

VANESSA: The only one I speak to about it is my oldest sister, because she went through something similar. She stopped her medication, but she wouldn’t tell me to stop. She says if anything happens she would call her doctor and start all over again. I don’t talk to anybody about it because I don’t think they would understand. Some of my friends have asked me to explain it to them, to explain what happened, but I don’t think they would understand. I think they would laugh if I told them half the stuff that I’ve been through. It’s not funny. It’s painful. It’s really scary.

MARCUS: I don’t want people to see me differently. If I tell them I have a mental illness they might see me differently, like not want to hang out with me. I don’t really tell my friends. They might see me differently. “We better not hang out with him because he’s sick.” I tell my family and doctors because they can help. I just tell employers I had a sickness. I don’t tell them what I had.

AMBER: My family knows that I have schizophrenia. I told my best friend I was in the hospital, that I was very confused but now I am getting well, and that I am going on with my life. I guess I’m still a little worried about the stigma of the illness. I guess I don’t want them to think I have multiple personalities or say, “Oh my god, she has schizophrenia, that must be bad.” I don’t want them to look at me in that way. I don’t think I would tell employers because I still care what other people think about me. I know at times I shouldn’t, but I think I would feel better if they didn’t know about it.

BEAUX: I feel like people, family, friends label you. Everybody loves you, but there’s still a little bit of that label on you. I try not to let it bother me. Whatever I do, I try to put my energy into it. I’m not sitting around thinking about it because that’s not good. I try not to tell friends. My job knows. I would have preferred for them not to know because of the labeling.

MEREDITH: Discuss with family whom to tell.I don’t think right away you should tell anybody. But as time goes on you can. It takes time to accept it in your life. It takes time for other people to accept it.

SAM: I believe people will shun me if I tell them. Like if I want to go out with a girl, I am sure there will be a change in her dealings with me. But if I said I have asthma or diabetes?

THOMAS: I think you shouldn’t hide it. Tell your family, but if someone else finds out it depends on who it is. I would tell people if I went for a job. SAMANTHA: I have a little girl, and my daughter knows that something has been wrong with me for a long time. Exactly what, I haven’t explained yet because she is pretty young and wouldn’t understand. I don’t want to cause her any more extra stress than she is probably experiencing because of our separation.

You have to tell your mom and dad. You have to tell the apartment program; your social worker, your doctor, the medical center where you are getting your care have to know what is happening. You have to use your discretion in what you say to people and whom you trust with this information.

BEN: Some family members are blabbermouths. Obviously immediate family should be the ones you tell because this type of illness affects you negatively. If you want to get a job, that will affect you. And people look at you differently if you tell them you have schizophrenia. People in your classes won’t want to sit next to you.

This issue of whom you should tell conflicts a little with what counselors tell you, that you shouldn’t be afraid or ashamed. Basically, no one should know. Don’t feel bad you have it, but we live in a world that’s not all nice people.

RICHIE: I tell some people, but when I meet a new girl I pretend I don’t have anything wrong with me. When you trust a person that you know, like after you know them for a while.... I don’t say anything when I go for a job because a lot of people fear what they don’t understand. The people I told didn’t make fun of me, so I had good experiences.

ZELDA: I think you should tell anyone that’s close to you, and hopefully they will accept it. At first I would hold back from any school you are trying to get into or any job you are trying to get. It’s not a casual mention, like “I had chicken pox and I had schizophrenia.”

There are no rules about whom to tell. Each person makes up his or her own mind about telling friends and family members. The people you must tell are your doctors and therapists.

For more information about stigma and schizophrenia:

NAMI’s StigmaBusters. See the Web site for the National Alliance for the Mentally Ill, www.nami.org, and click on their link to “stigma.”

MentalHelp.net: www.mentalhelp.net/. Enter “schizophrenia and stigma” in the search box to get the latest article.

Mental Health America: www.nmha.org/

Me, Myself, and Them: A Firsthand Account of One Young Person’s Experience with Schizophrenia, by Kurt Snyder, Raquel E. Gur, and Linda Wasmer Andrews (Oxford University Press, 2007).