Being Mentally I11: A Phenomenological Inquiry

Mary E. Johnson

There have been few studies that have attempted to understand the world of one who is mentally i l l . This interpretive phenomenotogical study, which began as a study of the meaning of being restrained, became a glimpse into mental illness. For this study, 10 psychiatric patients were questioned in unstructured interviews. The taped interviews were transcribed, and the resulting texts were analyzed with use of a modification of an eight-stage process. Heideggerian hermeneutical phenomenology provided the philo- sophical framework for this study. Two major themes--struggling and "why me?"--revealed what it is like for the participants to live with a serious mental illness. These participants struggled with the staff on the unit, with being restrained, and with the symptoms of their illness. As part of their struggling, they asked, "Why me?" - - a question that could be interpreted existentially as, why are things the way they are and not some other way? Finally, this study underscores how important it is for the nurse caring for a psychiatric patient to enter into, and try to understand, the world of patients with mental illnesses. Copyright o 1998 by W.B. Saunders Company

I ~ I ~ E R I O U S L Y ILL PEOPLE are wounded not just in body but in voice. They need to

become storytellers in order to recover the voices that illness and its treatment often take away" (Frank, 1995, p. xii). And yet, the narratives of individuals with mental illnesses are virtually ab- sent in the literature.

This article reports one finding from an interpre- tive phenomenological study of the meaning of being restrained on a psychiatric unit. Surprisingly, this study became a mode of access to the partici- pants' world--that of being a person with a serious mental illness. On the one hand, this finding should not have been a surprise. If one thinks of the events in one's life as meaningful within a context, it makes sense that an event such as being restrained would be inseparable from the whole of being mentally ill. On the other hand, we in psychiatric nursing have inherited a tradition that attempts to compartmentalize and decontextualize experi- ences. In that tradition, one would expect only to hear about being restrained. After all, that is the story one seeks. This article presents a glimpse into what the participants' lives are like, struggling with the constraints of a mental illness and wondering

why it is that they have been thrown into this way of existing.

REVIEW OF LITERATURE

Four studies sought to understand mental illness from the perspective of those who are mentally ill. Of these studies, one (Muller & Poggenpoel, 1996) explored psychiatric patients' perceptions of their interactions with psychiatric nurses, and another (Dzurec, 1990) described the relationship between the participants' perceptions of their mental health and their daily levels of functioning. Two studies (Moore, 1997; Vellenga & Christianson, 1994) used phenomenology as the research methodology. Moore's study was an inquiry into meaning in the lives of 11 suicidal older adults, whereas Vellenga and Christianson explored the perceptions of ill- ness and its impact on the lives of 15 severely

From the Rush University College of Nursing, Armour Academic Center, Chicago, IL.

Address reprint requests to Mary E. Johnson, Ph.D., RN, Rush University College of Nursing, Armour Aca- demic Center, 1042D, 600 S. Paulina, Chicago, IL 60612.

Copyright © 1998 by W.B. Saunders Company 0883-9417/98/1204-000353.00/0

Archives ofPsychiatricNursing, Vol. XII, No. 4 (August), 1998: pp 195-201 195

196 MARY E. JOHNSON

mentally ill individuals. Both of these studies reveal the sense of sadness, loss, and alienation that the participants felt, as well as the participants' need for others to understand and connect with them. The authors in both studies conclude that it is important for the nurse to understand the clients' world from the clients' perspective. As Moore (1997) states, "When nurses enter into that world, it is difficult not to be touched" (p. 34).

METHODOLOGY

Any question about meaning is not simply a question about what happened, although that ques- fion may get answered. A question about meaning is a question about how one understands an experi- ence (such as being restrained or being mentally ill). Therefore, to study the meaning of an experi- ence, one must understand how the participants in the study interpret an experience within the context of their world. Interpretive phenomenology (Allen, Benner, & Diekelmann, 1986; Benner, 1994; Polk- inghorne, 1988; van Manen, 1990) was the method- ology used in this study to uncover this understand- ing.

Background to the Method

Heidegger (1927/1962) saw hermeneutic phe- nomenology as a way to uncover and understand the meaning of being. Phenomenology, according to Heidegger, is "the work of laying open and letting be seen, which is understood as the method- ologically directed dismantling of concealments" (Heidegger, 1979/1985, p. 86). Therefore, phenom- enology, which derives its name from the Greek verb phainesthai, meaning "to show itself" (Heideg- get, 1927/1962, p. 51) and the Greek word logos, meaning "to make manifest what one is 'talking about' " (Heidegger, 1927/1962, p. 56), allows something to show itself as it is. And "that which shows itself, the manifest," is the phenomenon (Heidegger, 1927/1962, p. 51). Phenomenon, as derived from phainesthai, is further derived from phaino, which means "to bring to the light of day, to put in the light" (Heidegger, 1927/1962, p. 51). Thus, interpretive phenomenology aims to bring a new light to current understandings. It aims to provide an open horizon for understanding a phe- nomenon to emerge and be communicated to another (Gadamer, 1960/1989).

Data Collection

After obtaining approval from the Human Inves- tigation Committee, 10 adult psychiatric patients were interviewed who (1) had the experience of being physically restrained in leather restraints on a psychiatric unit, (2) remembered that experience, and (3) were able and willing to share their experiences. Elderly, demented individuals were not included. Participants for this study were initially referred by the staff of two inpatient psychiatric units. The author discussed the purpose of the study with each prospective participant and if willing to participate, a mutually agreeable appoint- ment was made for the interview.

Ten adults agreed to participate, 5 men and 5 women. This was the first restraint experience for one participant, whereas the others had been re- strained more than once. The interviews were conducted by the author using an unstructured format that began with a statement that encouraged the participants to recall and describe an instance of being restrained that stood out for them (Benner, 1994; Diekelmann, 1992, 1993). The researcher allowed the story to unfold, asking questions to clarify and encourage more detail and specificity.

Data Analysis

The interviews were transcribed verbatim, thus producing a written text. Although the actual method used to analyze the texts of the interviews was a modification of that described by Diekel- mann, Allen, and Tanner (1989) and recently re- vised by Diekelmann (1995), it is important to remember that one does not obtain an understand- ing of the text by following a linear set of steps. The analysis of the text is reflective, reflexive, and circular. In the beginning, each story was read in its entirety in order to obtain an overall understanding of the text. Common themes that emerged from the text were identified. An interpretation of each interview was written, explicating the themes that emerged by means of excerpts from the text to support the themes. Thus, the interview was orga- nized into a coherent story. Because there were often several stories embedded within the text, the aim was to gain an understanding of the story as a whole, i.e., how the story fit together. The danger here is (1) that the researcher will not be true to the text, thus approaching the text from a viewpoint that cannot be supported by the text, or (2) that the researcher will impose theoreticai categories onto

BEING MENTALLY ILL 197

the text. The themes that are identified should not be theoretical concepts but should emerge from the text and from the words of the participants. The themes should name that which is emerging. To ensure that the author was true to the text, the texts and interpretations were shared with individuals who were familiar with the methodology. If there were questions about the author's interpretations, individuals returned to the text for further clarifica- tion.

The analysis continued with each subsequent interview. Thus, as themes emerged from each interview, the analysis, in a sense, became a dialogue between the texts. This dialogue involved moving back and forth between the parts of the individual texts and the whole of the texts, as well as with the historical tradition (the researcher's and the participants) from where their understandings emerged. This dialogue with tradition is not meant "to claim that we maintain a continual conscious- ness of the traditions we are embedded in, only that they have a certain intelligibility and a history that could be discovered and articulated" (Kerby, 1991, p. 44). Finally, the dialogue included a conversa- tion between the understanding of the interviews and the texts of both Foucault (1983) and Heideg- ger (1962; 1985; 1993). Thus, as new meanings emerged from the dialogue, the understanding of the text deepened and moved beyond what was openly stated by the participants (Gadamer, 1960/ 1989).

RESULTS OF THE STUDY

For these participants, living their everday life was difficult. This difficulty was manifested in their struggling against the staff, against restraints, and with the symptoms of their illness, and in the question, why me? Embedded within the themes of struggling and the why me question, these partici- pants also revealed their "thrownness" (Heidegger, 1962). Concretely, these participants were thrown into restraints. More significantly, however, these participants were born into a body, a family, and a culture that continuously shapes who, what, and how they are.

Struggling

The theme of struggling was revealed explicitly as the participants told of their struggles with the staff and of their struggles to get free from re- straints. For example, Barb (all of the names of the

participants have been changed), tells how she struggled with the staff about the rules on the unit:

They were coming into my room, and they wanted me to go out to the day room. And I didn't want to. Well, they thought I should go to the day room. Well, there was a whole gob of people standing out there. And I stepped into the hallway and I said, " I 'm not going." And they said, "No, you have to go." And so I planted my feet and about 20 big guys, maybe 100, jumped on me. I 'm not a TV person. They think it would be better if we get out and socialize. Well, I 'd be better if I sleep. They wanted me to go do something, make beads or something, and I didn't want to.

She also struggled while she was in restraints:

Well, I s~uggled more. And she [the nurse] said, "Why are you struggling? You can't get free. You're not going to go any place. Why are you struggling?" [And they said] "What are you doing?" "Well, what does it look like I 'm doing. I 'm taking a shower. Give me a break." So they did. They tightened the restraints down."

Being restrained can be seen as a metaphor for the participants' lives. In that sense, the statement that Barb attributes to the nurse- -"Why are you struggling? You can't get free. You're not going to go any place."-- is quite telling. If one thinks of being restrained as being bound, confined, or constrained, then mental illness and the symptoms that are experienced are constraining. If one thinks of freedom as having an open field of possibilities (Foucault, 1983), the symptoms of mental illness restrict and limit one's possibilities and thus, one's freedom. Whereas psychiatric patients experience the constraining power that is exerted by others literally when they are restrained, the limiting and restraining effects of their psychiatric illnesses are less apparent.

Another participant, Diane struggled with diffi- cult choices in her life. She became pregnant while taking the drug lithium and therefore needed to decide whether she should terminate her pregnancy or continue with the pregnancy and discontinue the medication. She decided to continue the pregnancy, and thus she struggled with the return of the symptoms of her psychiatric illness. In the follow- ing vignette, she recounts how things were before she came into the hospital. One can hear the struggle in her voice:

"I couldn't stand up and walk. I guess mainly because my doctor took me off my medication, for myself. I was just so weak. Carrying this baby. I gotta carry him 9 months. I made this decision. I chose. I made the decision to go on

198 MARY E. JOHNSON

and have this baby. It just took so much strength. And my youngest child at the time was 5. And the other one was 6. By my taking lithium and all those kind of medications, everybody thought that my baby would be born with brain damage and no spine and all that. I went through all that. And so I entered the hospital. The only reason I came 'cause I had to stop taking my medication in order to carry this child. Which was my choice, whether I wanted to keep the child or not. But I chose. I wanted to keep it. And I had to stop taking my medication in order for this child to grow in me, to develop in me or whatever. They could save what is left of the child. You know, if the child had brain damage or whatever. So when I found out I was pregnant, I called my [doctor], She told me just come in, and she completely took me off all the medication I was on. For my health. It was a very, very difficult pregnancy. The baby's father didn't want to have nothing to do with me. Didn't want to have nothing to do with me. He said he didn't want no relationship, no commitment. 'Cause he had been in a 5-year divorce, marriage and was pending divorce. The divorce was in process. You know. It was like I was caught in the middle of all that.

As she continues, she talks about going home, pregnant, and medication-free:

I cried so hard. I ain't cried again since then. If I watch a show or something and they talking about children and something happened to the children, you know, I might well up with tears in my eyes. But the way I was crying. It was like I had lost somebody through death. You know? Then when I was finish in the hospital and I go home and I be crying like my grandma. I 'd be feeling this way because I don't have no medication in my body for myself. You know, helpless, so I couldn't do nothing. Nothing, Talk about eating. I couldn't eat. I had to force myself to eat. Force it.

Diane then tells a second story of being restrained. She begins that story when she was at home, struggling to take care of her sick baby. She was worried about her child but did not seem to be able to figure out what was wrong with the baby or what to do. Finally, her mother intervened, and some- where in the middle of the scenario, she was hospitalized:

Yes. And see won't nobody listen to me. Yon know. Every time I say something, [they say], "Oh, she crazy. She don't know what she talking about." But this is a life here. You know, I 'm trying to save my baby's life. Cause it's wrong. They telling me, not my mother, they telling me he got an ear infection. If a fever persists more than 3 to 4 days, take him to the doctor. And it was almost 8 days. You know. SO t just came here and I just left everything in the world in my mama's and daddy's hands. When my mom couldn't break his fever after Friday, after Saturday, she brought him into the hospital.

At times, the participants' struggle was about

distinguishing what was real from what was not real. They struggled with trying to make sense of their thoughts and with what was happening to them, Although the participants' pain and suffering were apparent in the interviews, struggling with trying to make sense of it all seemed to be underneath their pain and suffering.

Dan best describes this struggling when he recalls a restraining episode that was precipitated by his fear that the other patients on the unit had AIDS. He thought if he went into restraints, the staff would put him in another room on another floor. That did not happen; he was restrained on the same unit. His thoughts about staff and his distress because of not knowing what others were up to were intertwined with his description of being restrained:

It all started because I was afraid I was going to get AIDS. Because there were no sanitary conditions. I had room- mates that were picked up off the streets. I was telling myself that I almost had AIDS. I finally went up to the desk. I said, "I want to be located. Put me down somewhere. I want to go downstairs. Put me down there so I could be at less risk." Anyway, they agreed. And after doing that, they said, "Okay, we'll put you down. We'll put you down, and then all of a sudden, they're like, "No." And I 'm suffering in the hospital with my mental illness because they don't know what they are doing. And I can't get in touch with my doctor. Because they're too busy playing their games . . . . It was [anger] at staff. And it was a t . . . myself. That 1 had let myself get into an outburst. But I said to myself, "If I don't do it, how long will this go on? If I don't go into outbursts now." I try to cooperate. I've been in this hospital, say, it must have been 2 weeks. Or a week and a half. If I don't do it now, you know, when will they stop? I mean, it's like, you know. It's like . . . . I remember from seeing the movie "The Godfather." They said they should have stopped Hitler at Munich. Or something. It's like if you think about Desert Storm. Or World War II. Any war. It you think about something where it should have been stopped. You know, at a certain point, b u t . . , another force, kept on going. That's what I thought. I thought that if I don't let these people know that I 'm serious and I 'm not meant to be played around with, next thing I know I 'm going to be in there 2 months. They're going to keep on tormenting me. So, it's like, I have to do something. And I think that worked. Though it didn't work in my favor. I got injured and stuff. I think it made them realize that I was not to be toyed with. And I thought they were going to try to get me again. 'Cause they were making . . , they were making the same moves. Fast moves. And everybody was jumping around. So, okay, here goes my blood pressure. I 'm getting all ready. Everything's going. Everything's racing inside, but on the outside I 'm calm. I 'm cool and kind of like walking around smiling, kind of like I am now. Just looking happy. Like I 'm just alt doped up on whatever, on Valiums, whatever happy pills. All of a sudden in my mind, I 'm

BEING MENTALLY ILL 199

thinking, "What the hell are they doing? What the hell are they doing?"

This struggle prompted Dan to ask himself if he could really trust the staff. He wondered if the staff would hurt him. He wondered if he would be safe. Because Dan was never sure if he could trust the staff, he was quite frightened while in restraints:

I was scared. I was scared out of my mind. I was scared that I might get AIDS. I was scared that somebody might come i n . . . and stick me with a pill that might kill me. Just out of watching movies, And television. What happens in hospi- tals. Afraid that somebody might just come in there and say, "Hey, this guy is really a nuisance. He's talking about suing the hospital. Why don't we just go in there and give him a dose of this thing." So, I had a definite fear of death. The AIDS factor, too. Could have been prevalent. And didn't know who they would have sent in there or what they would have done to me. They might have sent a guy in there to bite me who's got AIDS. I mean, I knew at the time that they [his thoughts] weren't true. But everything or anything was racing through my mind.

It is difficult to imagine what living one's day to day life is like when one is psychotic and unable to organize or make sense of what is happening. Doreen, for example, gives us a glimpse of what it was like for her. She looks back, knowing now that she had not been thinking clearly:

I just couldn't sleep, so I kept cIeaning whatever and my mind j u s t . . . I imagined things that weren't real. Like it was the end of the world. And stuff like that.

And while she was in the hospital:

I thought I was a fountain. So I'd take some water and drink it and I 'd sit on the table and spin around and squirt water over. But as far as being out of control, I don't really think that I was. I was doing dumb things. I was really not in my fight mind.

These participants struggled to live their lives. Yet Barb also talked about the times in her life when nothing mattered to her. She recalls strug- gling with wanting to die and her sense of failure that she could not successfully kill herself.

I don't really, reaily have a lot to say, because when I get in these moods, people get scared of them. Because I 'm just flat out not afraid to die. And I could care less. No, I didn't want to be protected. I wanted to kill myself. Very sad, isn't it? You guys are stuck with me. I can't even kill myself.

Orlando was another participant who struggled with wanting to kill himself. Yet, it seemed that his struggle was also around wanting to live. He was

hospitalized after a suicide attempt that was precipi- tated by a change in his anticonvulsant medication:

What was happening is the fact that I tried to kill myself over the fact this medicine I was taking. Now the medicine

worked perfectly. I didn't have any seizures. But it gave me depression. So I tried to kill myself. Twice since November I didn't have any seizures, but I had depression. And, I wanted to get rid of it. And what I wanted to do was that I

wanted to stop taking the [medication]. I wanted them to give me the Depakote. And they wouldn't do it. They said

what they'll do is, "We'll reduce it slowly, and give you the

Depakote. And I got mad.

According to Heidegger (1927/1962), we are "thrown" beings. In essence, this means that we are born into particular circumstances and situated in a particular time and place. This means that by virtue of our existing as who we are, our possibili- ties are limited. In other words, although we act as if we have complete control over who and what we are, there are limits to what we may become. We will always be finite human beings. These partici- pants were attuned to this "thrownness." They were aware of the constraints of having mental illness and how the illness limits their lives. Although they were living into their possibilities, they were reminded of the limits of their hopes and their dreams. And still, they struggled with these limits.

Why Me ?

For these participants, a sense of their own limits was manifested in the question, Why me? On one level, the why me question was very concrete and literal: Why was I thrown into restraints? or Why was I watched more closely? But on another level, it was an existential question: Why am I the way I am? Why am I mentally ill?

Because Carl could not remember what precipi- tated his being restrained, he believed the restric- tion was unjust. This is what he remembered about the first episode and what he was thinking about while he was in restraints:

So, it's like I 'm the victim, what did I do? I thought about Jesus Christ. What he must have gone through, to be nailed to the cross. And that, I think, helped. The suffering and the. Well, at that time, I felt like I wasn't justified to be there. So I rationalized Jesus Christ. How he was not justified to be nailed to the cross. I was not justified to be in restraints, you see. But the fact of the matter very well could and probably

200 MARY E. JOHNSON

is different with the first time. Now, the second time is another matter."

Be tween the t ime he agreed to be in te rv iewed and

the actual interview, he had spoken with staff to ask

them why he was restrained. W h e n he was inter-

v i ewed he felt more reso lved about the first restrain-

ing episode. He still, however , did not understand

the reasons for the second episode. He cont inued to

wonder, W h y me?

The second one that happened fight outside my door here was within a day or less of the first one. And I said something to one of the nurses, a male nurse, big guy, about my size. And I went like that to talk to him, to get my point across like that. That was it. Restrained. And then, after the fact, I find ont. I see an episode where a girl is smashing a chair in a room, to splinters. Just recently. No restraints. Doesn't seem very fair to me. And the second one, I think, was definitely uncalled for. They could have told me, "Stay in your room 15 minutes." There was no, there was no option there. I've since . . . accepted the situation. So, I have no animosity towards him. He did what he thought was best. I saw this trapesty [travesty], in the second time, afterwards, as far as the guidelines, and I realize that there's human error there. You know, there's two different people and they're going to think. They're going to have a different viewpoint of the situation, so that's why I came to the point of like, that's okay.

Dan was another part icipant who wondered not

only why he was in restraints, but why he was

hospi tal ized on a psychiatr ic unit. His response to

the w h y - m e quest ion was to get angry at both

h imse l f and the staff.

Just anger and confusion. And like, "Why am I here?" I mean, like I've seen people along the whole hospital that were more messed up than I was. And I said to myself, "Why am I in restraints?" Here I am thinking, "I 'm paying." I go, "You. . . animals. You're treating me like. What is this, a Nazi camp? And that's what I was saying. It was like a Nazi camp. After I stopped struggling, I lay down and started thinking. It was over the Christmas holidays, so I would start thinking about all the people who were having a good time. What I could be doing. I would start thinking about my ex-girtfriend. I would get mad. I would start thinking about my brother. My family. Every- body else. I felt that they had abandoned me. I would get mad. And I would continue to struggle.

For some participants, the w h y - m e quest ion was

less concre te and explicit . M a n y participants talked

about their anger at staff. Yet their anger seemed to

be a way to cope with how things were for them.

The anger seemed to cover over the w h y - m e

question. For these participants, the ques t ion re-

ma ined impl ic i t and hidden.

James was one whose w h y - m e quest ion was

more tacit. He was angry and felt he was undeserv-

edly restrained. He responded to being restrained

by wishing bad things for the staff. Under ly ing

these statements, however , was a wish that things

could be different for him. His anger covered over

his sense o f powerlessness:

I was saying things like "You could pay for this because I don't feel like I was out [of control]." I felt like they're going. Somehow they're going to pay for it. [By] things happening to them. I can predict things happening to people. I was wishing a lot of bad things happening to people. Getting into car accidents. Having migraine head- aches. Getting into arguments with their family members. Any kind of negative things that you could think of. I was just angry, so I said a lot of things that I didn't mean. When you get angry, you say things you don't mean. I was saying things like "I hope yon get hit by a semi on your way home from work." And things like that. I just kinda lost control, but I was in a lot more control than they realized.

C O N C L U S I O N

Life is not an object that stands before one. It is

not something that runs its course behind one.

"Rather , l ife is what l ife i tself accomplishes , en-

joys , survives and what, l ike a river, it guides

through i tself and carries by its own stream. Life is,

as they have said and taught since the nineteenth

century, ' l ived exper ience . ' A n d l ife is not only

occas ional ly a ' l ived exper ience , ' but is a cont inu-

ous chain of ' l ived exper iences ' " (Heidegger ,

1981/1993, p. 76). As nurses, we are not concerned

mere ly with a disease. We are concerned with

people ' s l ives and the impact o f i l lness on their

l ives. As nurses, we do not s imply deal wi th a

disease. We deal with the whole person (or family).

Therefore , we fo rm a relat ionship with the person

(or family). We empath ize with a person. Whi l e

theories do give us a detached unders tanding of the

client, theories do not tel l us h o w someone is

exper iencing life. Theories do not provide us with a

w indow into another person ' s world. Theor ies do

not help us empath ize with another person 's experi-

ences. To do that, one must enter into that person ' s

world. That is, the nurse must l isten to what the

person says and to how the person makes sense of

and puts l i fe ' s events together. The nurse must

listen for the meanings in the person ' s life.

Kay, Wolkenfeld , and Murri l l (1988) state that

" o n e must ques t ion the val idi ty of self-rating

methods as appl ied to a psychiatr ic populat ion, for

which the assumptions o f cogni t ive integri ty and

BEING MENTALLY ILL 201

normal judgment and insight are routinely vio- lated" (pp. 539-540). One cannot help but wonder whether it is this belief that has contributed to the paucity of research regarding how psychiatric pa- tients experience events in their lives. This study has shown that the issue is not whether the events as the participants reported them happened exactly as they reported them. The issue is understanding how the participants experience these events. Dur- ing her interview, Diane kept saying, "It's sad. It's so sad." And it was sad. The participants in this study reveal how their sadness and distress are hidden behind their words and actions. In the busy world of an inpatient unit and under conditions of potential danger, it is easy not to look beyond the words and the actions of psychiatric patients. Yet, if as Vellenga and Christianson (1994) and Moore (1997) report, psychiatric patients feel alienated from other people, then empathically trying to enter into the patient's world is the only way to bridge that gap.

ACKNOWLEDGMENT

The author would like to thank Pam Ironside, PhD, RN, and Cathy Andrews, Ph.D, RN, for their thoughtful and helpful comments about this manuscript.

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