There is a crack in everything, that’s how the light gets in. –Leonard Cohen
America has an interesting relationship with mental illness. It loves to observe mental illness from a distance. Usually, that distance is provided safely by a screen and a room full of writers. Then the writers produce shows like Perception, where the brilliant and schizophrenic Dr. Daniel Pierce solves crimes, between teaching classes at a local university. Or Monk, or American Housewife, or United States of Tara, or BoJack Horseman. Of course, how the portrayal of mental illness in these shows stacks up against reality is debatable. However, when the screen is removed, Americans have shown themselves much less likely to appreciate mental illness.
1 in 5 Americans – that is, 47 million people, or almost 20 percent of the population – live with some form of mental illness. Despite the prevalence of mental illness in the U.S., there remain unpleasant stigmas associated with having it. Researchers, like Dr. James Livingston, have found that, other than having a non-traditional sexual orientation or being HIV positive, there are few human conditions that carry a more negative connotation than mental illness. Psychotherapist Amy Morin says the stigma surrounding mental illness is so pervasive it can prevent people from seeking help for years because they are concerned about how a diagnosis will affect their job, their business, and their social standing.
Misconceptions about mental illness continue to flourish. For instance, the idea that mental illness is the fault of the individual who has it – that they have somehow brought it on themselves. If you open the homepage of the National Alliance on Mental Illness (NAMI), a mental health advocacy group located in Virginia run by psychiatrists and psychologists, one of the first assertions they make is that mental illness is not the fault of the individual who has it. Lisa Ferentz, a psychotherapist, writes, “Our culture still perpetuates the belief that people suffering from mental illnesses are not intelligent, extremely violent, or incapable of making decisions that profoundly impact their lives.” Away from the flickering silver screen, far from being fascinating, mental illness just seems to make many Americans nervous. Indeed, most people if they see an individual talking to themselves or gesturing at an unknown shadow move away. Dr. Livingston writes that individuals who suffer from mental illness often feel “as though they are devalued and discredited members of society.”
Taken all together – the stigmas, the misconceptions, the mental illness itself – it is only logical to conclude that living mental illness must prove challenging. But, what is it like to live daily with mental illness in America? What are the challenges, the fears, and the hopes of those individuals? I knew just who to ask for perspective – my Mama.
The National Institute of Mental Health (NIMH), says that 1 in 25 people in the United States lives with a serious form of mental illness like schizophrenia, bipolar, or major depression. My Mama is one of those people; she has bipolar. In my lifetime, my Mama has never hidden her diagnosis. She has always been willing and prepared to ask for the help she needs, regardless of how she is perceived. She is brave. I asked her if she would be willing to sit down and have a conversation with me about what it is like to live with mental illness and she agreed.
Our conversation took place on a rainy afternoon in my Mama’s little apartment. The weather here in North Carolina, even in the mountains, has only recently grown cold. When the cold finally arrived it seemed determined to make up for the lost time and the weather the afternoon of our interview was bitter, and Mama answered the door wearing a full-length blue fleece robe. She was a bit under the weather and wanted to lie on the couch while we talked. I made her a cup of tea, she got comfortable, and with the rain flinging itself against the windows we got started.
*Note: My Mama and I have the exact same initials, so for this conversation, Mama will be MJW, and I will be JW.
JW: How old were you when you were diagnosed?
MJW: Early twenties (My Mom was born in 1951. Her initial diagnosis was in 1970).
JW: Do you remember what symptoms you were displaying that led your family to say, “Something is going on with Judy”?
MJW: Maniac behavior, not being able to sleep for whole nights at a time. That was the main thing. But then I got less and less in touch with what was going on with me in reality.
JW: What was your reaction to your diagnosis?
MJW: They told me I was schizophrenic, that I had a shattered personality. I didn’t quite agree with it (*see note at end).
JW: Were you surprised by your diagnosis?
MJW: Frankly, I didn’t know what was going on (laughs).
JW: How did your family respond? How did Grandma and Grandpa react to your diagnosis?
MJW: I’m a little fuzzy around the edges about that. I know Mom came to visit me at Dorothea Dix (hospital in Raleigh NC) and Harvey (her youngest brother) came to visit me at Broughton (a now-defunct State-operated Mental Hospital here in N.C.). Mom asked Uncle Paul to pray with her, that my time in the hospital would be short. So I think my total time was six months.
JW: That was your first hospitalization? You were there for six months?
JW: Wow, I didn’t realize it was that long Mom.
JW: Did you and your parents ever talk about your diagnosis?
MJW: I don’t recall it if we did. I knew that they loved me, and cared about me, and wanted me to have the best care I could receive. We decided on counselors and we went with Broughton. Altogether, I had twelve hospitalizations.
JW: Let me rephrase my question a little bit, Mom. I’m wondering if your mental illness was something that you and your parents were ever able to openly discuss, or if it’s something that kinda got pushed to the side.
MJW: My parents and I did not actually openly discuss the diagnosis, or that I had hospitalizations. We just didn’t do it.
JW: Do you think that was reflective of the time you were living in?
MJW: Oh, absolutely. If you went to a counselor, there was really something wrong with you. If you were in a hospital for mental illness, that was just a…kind of a disgrace to your family, and to you.
JW: It sounds like that means it was never something you were able to discuss, really, with anyone; except for maybe your counselor.
MJW: That’s about right. My Mom had told us, “Don’t talk over your troubles with the neighbors – talk about them here, or with a counselor.” And, yeah, that is pretty much what I tried to do.
JW: How did your diagnosis change your life, when you were twenty years old? You said that you were at school at N.C. State when you were diagnosed?
MJW: I was actually at Wilkes Community College when I got diagnosed, and I went to NC State, following. I felt like I had to apologize for having opinions, ‘cause I was afraid it was going to be something wacky.
JW: What was your treatment plan when you were first diagnosed, Mom?
MJW: I don’t know I can tell you, really.
JW: Well, what did the doctors do? Did they automatically put you on a regimen of meds, or start you in counseling?
MJW: Oh, both of those. Yeah, they gave me a routine of medications to take, and they set me up with appointments with counselors, wherever I was gonna be.
JW: How did your treatment plan make you feel?
MJW: Like I wasn’t supposed to talk about it. Like I couldn’t actually have a normal life like other people. Just, a bit ‘fraid of life.
JW: Oh, Mama.
JW: So did your treatment plan work, Mom? Did it help you control the mania?
MJW: It helped some, but I got some kids at N.C. State to pray for me for deliverance from all these different invading thoughts, and everything churning around inside of me, and it started a healing process in me that took years. One thing I did that was just kind of stupid was I kept thinking, “Well my life will be more complete if there’s a man in it who I can love, and a family and children. I thought that was going to make my life complete.
JW: Do you think some of that stemmed from that initial reaction to your diagnosis-that you were never going to have a normal life?
MJW: Yes, I do.
JW: It seems like you were kind of thinking, if I have a husband and a family then I’m normal, I’ve beaten my diagnosis.
MJW: I also felt like it could never happen.
JW: It did though!
MJW: On the third try (laughs). Three engagements, and one marriage on the last one.
JW: One of the first things the doctors did after your diagnosis was to put you on a regimen of medications. Can you tell me about your experience with antipsychotic drugs, Mama?
MJW: I can’t.
JW: Well, did you always have a good reaction to the drugs the doctors put you on?
MJW: No, I did not. I had some medications that made you gain weight. Gave me a vast appetite and even though I was active and loved to climb the mountains and the hills with my brother, it was tough.
JW: What about Lithium? Tell me about your experience with Lithium?
MJW: Lithium was actually an improvement over what I had been taking, before. It was a mood-leveler that seemed to work, for me. I don’t blame my doctor for leaving me on it for twenty-five years.
JW: I do.
MJW: That was too long!
JW: What happened when you kept taking Lithium for twenty-five years, Mom? What did it do?
MJW: I don’t know, I couldn’t tell you.
JW: It shut down your kidneys, Mom!
MJW: It did. Anyway, I was having PMS every month, and Lithium seemed to help even it out, a bit. It got better, actually, when I started taking Lamictal, and that was the mood-leveler, instead of Lithium. Novaine was the best. It helped me stay in touch with this world, instead of floating somewhere in outer space in a nebula (laughs).
JW: Was it hard for your doctors to find a balance of medications that worked for you?
MJW: Oh, yes. My current doctor says that I have an unusual blend of medications, that it’s taken them years to find it, and she would not advise changing it. I’m thankful for that because when one doctor decided all I needed was an anti-anxiety, instead of an antipsychotic, I flipped out again. I got very manic. The diagnosis, there at Winston-Salem, was they didn’t think I’d ever be back.
JW: Mom, can we talk about your hospitalizations?
JW: How many hospitalizations have you had?
MJW: Altogether, thirteen.
JW: Which one was your longest?
MJW: The very first one.
JW: You said that one lasted for six months?
MJW: If you’re in Broughton, it feels like forever. The arts and craft department was the thing that I enjoyed the most. I made some different plaster of Paris things. I think what people noticed more about me was the blues. I mean some people have both, depression and mania, what was more noticeable to people, about me, was the blues.
JW: I’m actually going to disagree with you there, Mama. I lived with you for – I can’t remember how many of your manic episodes when I was a child – but when I was an adult, I lived with you for at least three. The depression definitely was an accompaniment, but I noticed the mania. It seemed more extreme because it was very obvious when you were manic. The things you did and said just didn’t make sense.
MJW: I’ll take your word, for that.
JW: It’s not that the depression wasn’t there, too. I remember coming home from work, one day in the fall. It was cold and I was making a fire in the stove in the basement. You followed me down the stairs and for twenty minutes you told me how sad you were. I still remember the last thing you said to me. You said that you didn’t know if anyone in the world loved you, except for Anne (her sister).
MJW: I felt a special bond with Rose and Anne, but especially Anne.
JW: You said you had thirteen hospitalizations. What was it like to be in the hospital? What was your routine like there?
MJW: Well, they had their routine. One of the things that bothered me a lot about the routine was almost no time outside. It made me feel really enclosed. I liked the other patients. I appreciated the doctors; I knew they were trying to help me, but I felt so enclosed like I was in a box and I couldn’t get out.
JW: How would you describe living with mental illness, Mom?
MJW: It’s really felt like living with a roller-coaster of emotions. I had the mania at one end, and I did have the depression at the other. It spilled over in my college work, and all the things I was doing. It was a difficult life, but it was a life! And I was glad I had the opportunity to live it out.
JW: Has having a mental illness complicated your life Mom?
MJW: Oh, very much! (Laughs)
JW: Isn’t that a silly question?
MJW: It has had layers of complication in my life. Not wanting people to know how bad I was feeling. I mean, if I was feeling really bad, I’d go back to bed and pull the covers up over me, and just stay there. I told my counselor about it and she said, “Well, it’s a whole lot better than going out and binging on something, or deciding you want to shoot someone.”
JW: I know that there have been certain things that I do every day that you’ve had to jump through hoops to do. Can you give any examples of those?
MJW: Well, I have to set up my med-box every Saturday. And I try to do it while I’m still pretty awake and coherent. That’s one hoop – a lot of people have that hoop. Journaling is a really helpful thing for me.
JW: Yes, but that doesn’t complicate your life. That helps uncomplicate it. I guess I should elaborate and give you an example. I was thinking about when you were able to drive. When it was time to renew your license you had to have your doctor fill out a form saying you were still able to drive. That’s one example I know; were there others?
MJW: When my medications were not quite in balance, my thinking was not as good it ought to be, for driving. I had a lot of car wrecks where I just fell asleep for a second, woke up going to the outside of the road, overcorrected, and went out through a field. Driving under the influence of medications is not for the faint of heart.
JW: What about having children? Was that complicated by having bipolar?
MJW: I had PMS every month, and each time I had a baby, I went through that postpartum stuff, and that was pretty intense.
JW: I thought you had to go completely off your meds while you were pregnant?
MJW: I had doctors that had conflicting opinions on that. One of them said, “Hey if you don’t take them you’re going to be doing really poorly.” My psychiatrist said, “These medicines have not been proved healthy for babies in the womb.” So he wouldn’t prescribe them.
JW: Didn’t that mean you had a manic collapse after each one of us kids was born?
MJW: After David; praise God, not after you; and after Becky.
JW: I’d say those were some complications, Mom.
JW: Have you ever felt ashamed that you had bipolar?
MJW: Yeah, I have. I felt like I brought it on myself, in my early twenties. Like it was a slippery slope I came out of emotionally, but I still had the disease. That was sad to me.
JW: Did you ever feel like other people looked down on you because you had bipolar?
MJW: I didn’t worry about that one, too much.
JW: I know, you’re awesome.
JW: Does bipolar affect your daily life, Mom?
MJW: It does. Like any illness would, it has an impact on you. Needing to take these medications, to kind of level me out, is a steady regimen. Needing to talk to a therapist and a psychiatrist, and having to arrange transport for all the appointments can be taxing at times.
JW: What is the biggest challenge you face, living with mental illness, Mom?
MJW: I guess, a deep-seated feeling of loneliness. It’s really only something Jesus can fill – another person can’t. When someone leaves, it’s good to plug into Jesus, to fill the empty space.
JW: Are you saying that your mental illness makes you feel isolated?
MJW: Yes, isolation is a good word.
JW: Is part of it because you feel that people who don’t have mental illness can’t experience and know the struggle you have?
MJW: I think everybody goes through something. I think everybody has a story that has difficult points in it; some more than others. I think, really, I’ve been blessed. Blessed with faith, family, and friends.
We drew our conversation to a close then. Mama was tired. We had been talking for hours, and some of the memories we had trudged through were not easy for my Mama Besides, I had promised Mama I would buy her lunch.
As I drove my Mama and me to Panera, my thoughts returned to my original question. What is it like living with mental illness? In short, it’s hard and scary. My sweet Mama’s story is just one snapshot in the larger picture of mental illness in America, but it is a realistic one. Reality is not as glamorous as the stories woven by the writers of Perception and the United States of Tara.
The final question I asked my Mama was if there was anything she wished everyone knew about mental illness.
She said she wished people knew that “I’m not that different from anyone else.”
Immediately, my mind was drawn back to an earlier part of our conversation, when she was talking about the fear her diagnosis had engendered in her. I had never heard my Mama talk about that fear before. The fear she would never be able to live a normal life; never get married, never have kids.
All these years later, I am happy to say that is exactly what she has had – a normal life. She did get married. She had three kids, and her life did not stop there. She goes to art class. She lives alone (something that, after her last manic episode, her doctors did not think was possible). She walks around her neighborhood almost every day. The neighborhood kids frequent her apartment because she stashes candy for them. She calls her kids (lots, and lots – I love you, Mama). She goes to the beach for her birthday. She calls me to ask what is wrong with her computer, even though I am an hour away (call Spectrum, Mama). She sends handmade cards to the people she loves. She tells people stories about the chipmunk who stuffs his cheeks full at her birdfeeder. She sings in the choir at church – or she did until they changed the rehearsal schedule – she is still not happy about that. She goes to the women’s group at church. She goes out with her friends. She revels in the visits of her children. She sits on her tiny porch and watches the birds. The point being, she lives, and she fully participates in her life.
If I could pick one thing for everyone to know about living with mental illness, it would be that life does not stop with the diagnosis. I would want it to resonate most with those people, who like my Mama, live with mental illness. So this line is for you, the individual struggling with your diagnosis, staring bleakly at the future, and worrying that nothing will ever be normal again: That normal life you want? It’s possible. Just look at my Mama.
*Note: When my Mama was first diagnosed, she was diagnosed with schizophrenia, which is not what she has. So I asked her when her doctors had figured out her correct diagnosis, and it got confusing. My Mama has some trouble with her memory, and nailing down her actual path to diagnosis proved to be a bit of a challenge. We hashed it out for quite a while. This is the recording of the conversation we had when we finally got it straight.
© Julie Wright 2018
Livingston, James D., and Jennifer E. Boyd. “Correlates and Consequences of Internalized Stigma for People Living with Mental Illness: A Systematic Review and Meta-Analysis.” Social Science & Medicine, vol. 71, no. 12, 2010, pp. 2150–2161., doi:10.1016/j.socscimed.2010.09.030.