Today, I wanted to discuss the solitude many people living with schizophrenia feel tempted by. I am one such person. These days, solitude means just me and my spouse. My love for my spouse and his for me have made us a unit, almost like one person. Before my marriage, I was strongly tempted by solitude and would go long without talking to anyone, despite having a job. I was in mathematics research, which can be a solitary activity, if you wish it.
The symptoms of schizophrenia can be so overwhelming that it can take all your energy to combat them and try to stabilize them, even with the help of doctors. Dealing with other people when you are struggling often makes your perceptions more confused, especially as most people don’t know how to deal with someone undergoing a mental health emergency. You are faced with the effort of compensating for your symptoms as well as fielding stigma from some of the people you meet outside your home. Schizophrenia symptoms can include psychosis, which brings a loss of touch with reality. Some people with schizophrenia know when this rupture is getting severe, and others don’t recognize it at all. In my case, I start by not realizing I am losing touch with the real world, but past a certain point, self-doubt takes over and I question my perceptions. This turnaround is either immediate or relatively rapid – within a few days, say, if my medication is doing its job. If my medication isn’t working, the turnaround can take weeks. Here my caregiver spouse is so helpful. He can tell if I am beginning to struggle and he tells me outright that I need to connect with my doctors. He never pushes me into social interaction that I don’t welcome, even if it means he is missing out too. My fear that he may be isolating himself because of me motivates me to work harder on what I can do for my symptoms so his situation is normalized. Yes, having a caregiver with whom you have an honest relationship can be so important. Like many people living with schizophrenia, even when my symptoms are well under control, they nonetheless present themselves. Still, medication and therapy give me the objectivity I need to identify what is real and what isn’t. So in talking about the temptation of solitude at its strongest, I need to think back to the long period after I left home, but before I married.
I had several severe relapses during those years, despite consulting doctors. It took me a long time to find a psychiatrist and psychologist who was genuinely effective at controlling my symptoms. Years of my life were spent doing my job as best I could. Being a research mathematician was an excellent choice due to its flexibility. I could work while feeling my best and rest when I couldn’t work well. My career was a success before I retired early to become a writer. My debut novel is The Overlife, A Tale of Schizophrenia, by Diana Dirkby, my pen name. You can find information on my Instagram account @dianadirkby_writings and on this website. The detailed account of the main character, Sarah, is close to telling what it’s like for me to live with paranoid schizophrenia.
I lived mainly in France when I was single, where research mathematicians aren’t paid well by American standards. However, I did not feel poor, as I had enough to buy what I needed and pay rent for my small studio. I even eventually purchased a two-room apartment. During a relapse, what is also called a psychotic break, though that description invites a lot of stigmas, I would have visual and auditory distortions that made it impossible for me to interact with people in any meaningful way, and a challenge to do much else, even at home. The best pastime for me during such periods was to listen to music. I mainly listened to classical music, a consequence of my upbringing. My love of films brought me to love a lot of film music and my marriage brought me my husband’s love of old-fashioned country music. So I would steep myself in classical music in my studio and only go out to watch a movie and shop. I had no TV. I often forgot to eat, which I could ill afford as I am chronically thin. Even antipsychotics, which are known for putting on weight, have not affected my waistline. My fellow mathematicians noticed this change and that’s how many of them realized I must be sick in some way. Their comments about my weight loss were helpful, as they motivated me to eat more regularly, aiding my eventual recovery.
In passing, let me comment that there is a lot of stigma against people who are overweight or obese. People often say they are greedy and that is why they are fat. There can be many reasons a person gains weight, from psychological problems to medications like antipsychotics. Everyone’s body has its way of reacting to food. There should be no shame or guilt attached to someone, thin or fat. If fat people overeat, then it’s a mental health problem and should be treated as such. Hollywood doesn’t help by often employing actresses and actors who are unnaturally thin or fat. Hollywood doesn’t help people living with schizophrenia either, as they usually portray such people as dangerous villains who commit crimes in their shows.
During those periods when I was single and fighting stigma, what was the attraction of solitude? In my novel, The Overlife, I describe a period when Sarah, like me, was sick and afraid to be at home. That was the most dangerous period for a eventual recovery outside a mental institution. I have never spent a period in the psych ward, even though that may have helped me at times.
Following my fear of my home was the conviction that it was a safe place. I didn’t particularly appreciate sleeping in the streets of Paris, France. The alternative was staying home. My home, a studio in Paris, France, at the time of my first big psychotic break, became my brain. I was undergoing many of the symptoms of schizophrenia, including auditory and visual hallucinations, but I felt that they were confined to my studio, hence the temptation to isolate myself there was powerful. I was able to muster up the courage to shop for food and I did mathematics during my better moments. Despite the apparent concern of some of my colleagues, no one visited me in my studio to check on my health. They viewed my confinement to my studio as the best location for continuing my mathematics research and staying out of trouble. No one wanted to know more.
The temptation of solitude at this stage was my feeling of control over myself. In my studio, I avoided anyone else who might throw me off balance, sending me backward from my attempt to recover. In my studio I could go through the paces of my psychosis with no audience to judge me. If I wanted to listen to music all day, I could do so. When I woke up with a clearer mind, I could do some mathematics without anyone judging that I hadn’t done enough to earn my salary. So avoiding judgment of my best efforts was a significant factor in tempting solitude. My studio also offered a place with few external stimuli and no person to cope with.
I did try a few psychiatrists and psychologists, but they were not effective. There was too much Freud in their approach and not enough science. I was quizzed about my sex life, which was zero at the time, and was told I married my mother just because I had cared for her for so long. I was insulted and left the appointments feeling worse than when I started. I eventually found a good fit of doctors in the USA after I married my American spouse and moved to the USA because of him. There is much to love about France and I still miss it, but the medical care for me was better in the USA, albeit much more expensive. Also, I was married when I moved to the USA, which was a huge factor in my getting well.
My strong temptation to be alone, or alone with my spouse, comes from my ability to control my environment. If I am struggling, I do not view this as a bad thing, but as a powerful tool for regulating my relationships with people outside my marriage. If you know someone with schizophrenia who is self-isolating, you should tread very carefully in trying to convince them to socialize more. I would recommend the support groups of a mental health advocacy group like NAMI. They are usually held weekly and are not judgmental and are run by trained mental health experts. They have support groups for mental health consumers and caregivers. You can also encourage self-isolating mental health consumers to engage with the tremendous number of similar people who are active online. I came late to social media, but I have found Instagram, for example, to be a great companion during a day when I can’t face going out. A word of warning: don’t overdo social media. A few hours a day is enough. If you are having a psychotic break, be careful about how long you spend on social media and what you post. The safest is to scroll, enjoy and leave short comments that could offend no one.
The solitude of the person living with schizophrenia may be a tool they are using rather than an indication of how sick they are. It becomes dangerous only when the consumer of mental health sees no way out of it. No one’s home should be a prison. They can begin with social media if they cannot physically change their situation. They can advance by physically attending a mental health support group. Those around them who love them can propose simple outings where they will not be expected to do anything but enjoy them. For example, they will not be expected to speak to anyone.
I use solitude as a valuable tool to moderate the symptoms of schizophrenia that I still have despite my great medication. My spouse knows by now that I will often say I am not going out today, but he never forces the issue. Through my love for him, I’ll make sure I confront trips away from home at least a few times a week for his sake. We have reached a good balance between my days at home and the days we go out together.
If you know a consumer of mental health who is self-isolating, try to visit them and say some kind words while you are there. Never criticize them or tell them their lifestyle is not acceptable. Leave your phone number and address and tell them they can contact you if they so desire. Please mention that you’d be happy to go shopping with them or share some other activity, like a walk, to encourage them to get out and about. Solitude is a great servant for someone living with a psychotic disorder, but it is a bad master. Please help the isolated consumers of mental health that you know to employ the servant but defy the master.