My collaborator on today's Being Patient post is Sid Prise, who was diagnosed with undifferentiated schizophrenia in 1997. To read more of Sid's writing, visit www.smallaxebooks.com.
I learned the word "paranoid" from my 7th grade bully, Ashley, who was a master of doing hurtful things and pretending she didn't do them. She'd pull her friends aside and whisper, giving me pointed looks and giggling. When I asked her the questions bullied girls ask - are you talking about me? Are you mad at me? - she'd say, "You're so paranoid." One day she left a dead mouse in my locker, and when I screamed, she began calling me Paranoid Mouse. For years, I thought of her when I thought of that word, and felt ashamed.
It wasn't until I read the diagnostic criteria for borderline personality disorder that I saw the word used in a clinical, nonjudgmental context. Criterion nine in the DSM is "transient, stress-related paranoid ideation or severe dissociative symptoms." At the time, this criterion was overshadowed by the more urgent and distressing criteria - the frantic efforts to avoid abandonment, the eating disorder, the suicide attempts. I took note of the word "paranoid," but I didn't dissociate, so I didn't give it much credence. I was more worried about whether the lover du jour was going to leave me.
Several years ago, I received a call from my dear friend Kathy. She'd met a man she really liked, she said, a brilliant writer, but she was hesitant to go out with him. When I asked why, she said, "He has schizophrenia."
She told me he took medication, that he was in therapy. He was, in fact, involved with a mental illness survivors' group called the Mad Tea Party, a Chicago organization that favored an openness and honesty about mental illness many have called "Mad Pride." I encouraged her to give it a try, and sure enough, they're now married. Sid and I have formed a close friendship since then - he has thanked me many times for being the one who told her to go out with "a schizy."
There's very little literature about the similarities between the experience of paranoia in BPD versus schizophrenia. In fact, my search turned up exactly one paper: a 2010 study in the Journal of Nervous and Mental Disease that concluded, "[Schizophrenics and borderlines] were similar in their experiences of voices, including the perceived location of them, but they differed in frequency of paranoid delusions. Those with a diagnosis of BPD, including those with schizophrenia comorbidity, reported more childhood trauma, especially emotional abuse." In other words, psychologists look at frequency, duration and personal history when deciding which diagnosis to make.
With that in mind, Sid and I exchanged a series of impassioned emails in an attempt to tease out the similarities and differences of our symptoms. We began by describing an episode of paranoia. Excerpts of our conversation follow.
Stacy: When my last boyfriend broke up with me, I was absolutely convinced that I was so unimportant to him that he didn't even remember me. My therapist and friends were saying, "You know that's BPD, right? You know that's not true. People don't just forget people they were close to unless they have amnesia." And on the one hand, I knew they were right, but I remembered one time when he was talking about his exes and I mentioned the girl he was dating when I first met him. He said, "Oh yeah, I forgot about her." He meant, of course, that he forgot to mention her, not that he didn't remember her existence, but I just kept hearing him saying that sentence over and over in my head. My brain was interpreting it very literally based on my feeling that I was worthless because he left me. BPD centers around extremely black-and-white thinking.
Sid: I've gone through periods where I am highly suspect of the meaning of people's facial expressions and body language--even their blinking their eyes or coughing or sneezing at certain times can indicate some "coded" messages to me. Not exactly the same, but very similar. The black-and-white thinking is very similar in schizy people -- very either/or, good vs. evil.
Stacy: When I was 20 and not yet on meds, I went through a period where I was terrified to be alone. I couldn't even be in my apartment if someone wasn't there with me, because things in the house started to look and sound different. One night when my roommate was out, I was watching TV, and I could see the lamp in the corner in my peripheral vision. I became convinced the lamp was moving, which was probably due to the emotional and cognitive dysregulation that comes from extreme stress, which was keeping me from eating or sleeping enough. Around that same time, I was over at a friend's cooking dinner for us one night and we had the stereo on. I realized I'd forgotten some ingredient, so he ran to the store to get it. As soon as he left, I heard the music come apart. All the instruments seemed disjointed and excessively loud. I left the food on the stove, ran outside and sat in the front yard until he came back.
Sid: I remember when I "lost" a battle with the voices once, and my girlfriend's father was playing this really exquisite classical music, women singing opera--and the music started getting ugly and demonic. I felt like I had already died and had gone to Hell. That lasted weeks, as I recall.
The voices, who are always in the street below whatever window I'm near, become very, very important. I have to feel the walls, which is comforting, like armor. The voices even have a word for it: they call it "going home." i remember when they wanted to emphasize that I was "homeless" because I let them torture me. There would be the sound of somebody banging a shopping cart below my window -- like, a homeless person -- to taunt me further. I can't go outside when I haven't slept very much--partially because of the paranoia, but also because I feel very palpably like I will "fall up into the sky."
Stacy: I've had that exact same feeling! When I was 28, I went through a year of horrible, suicidal depression, and the world quite literally looked different to me. I felt like everything had a brown cast over it, like colors were dulled.Everything seemed unreal to me, and I was so suicidal I started to feel like I was already dead. I felt like if I didn't keep fighting, I would just float away into nothingness. For some reason, the one thing I found comforting was doorways. I felt comforted by the square corners, and I would stand in doorways and press the backs of my hands against the sides. It was my way of keeping myself anchored to the earth.
You say your voices are always there, on the other side of the window. My version of that is the chants that go through my head constantly. They get louder if I don't take meds, or if I don't sleep, and especially if I'm stressed out. I find myself saying them out loud sometimes without realizing it. I'm able to keep from it when I'm with other people, but like if I'm out with friends and I go to the bathroom or something, and I happen to think of something I'm ashamed of -- shame is huge in BPD -- I'll say one of these chants out loud to combat it/atone for it. Some of them are just nonsense words; some are sentences I repeat. They mostly consist of some variant of "you're not good enough/you're fat/you're ugly/everybody hates you/you're not a real person." They're both destructive and regulatory, in that they're talismans against spiraling down into the shame.
Sid: When life gets messy in the world outside my head, I start to get more lost inside my head. The drama of the voices becomes more real, carrying me away from real stress into a world that totally sucks, but is perhaps more familiar.
Is madness in a weird, terrible, twisted way "helpful"? What if all this madness wasn't so completely negative after all? What if we could, as mad people, learn strategies not to avoid or conquer symptoms, but to channel and redefine them -- what if we could even use them to our advantage? For our growth, and even our happiness?
This idea we came to together suggests the validity of the whole variety of human experience-including madness. "Mad" or "sane," everybody has different coping mechanisms for dealing with stress. The key is learning how to live with these stresses, and how to navigate the mechanisms our minds have evolved to deal with them. The mind-even the mentally ill mind-is a system which can protect itself and sustain itself through creating patterns which give life meaning. Learning how Sid's symptoms parallel and even merge with mine, despite our differing diagnoses and life experiences, makes me realize how much he and I-and all of us, in all our sanities and insanities-have in common.