Living with schizophrenia poses some challenges, but as someone who has attempted suicide twice and was saved by strangers, I am thankful for the life I have, even with the challenges.
On a daily basis, I battle with a lack of motivation which makes it difficult to complete projects, or even start projects. I agonize for days over essays that I need to complete. I get the most accomplished when someone sets a deadline and sets expectations for me. I do complete some writing projects without outside motivation, but not as often as I would like.
Frequently I am uninterested in social interactions because of the effort and energy they take. I spend the majority of my time alone. I also suffer from a great deal of anxiety, and some paranoia. Both of these issues cause me discomfort that can occasionally be extreme.
Considering I have a severe mental illness and suffer from the symptoms I described above, I feel like I have done, and continue to do, fairly well. Before I came out publicly with my diagnosis, I spent many years as a social worker, marketing coordinator, and working in a university library. I have had some rewarding and fulfilling jobs.
I have also been fortunate enough to attend college, complete a degree, and participate in workshops, graduate school, training programs, seminars and classes on and off throughout my whole adult life. I am currently working with a writing mentor to transition from unemployment to a freelance writing career. I want to return to work, but I no longer think it is possible to work from 9 to 5 in an office setting – the stress of that type of employment increases my symptoms to a point that life is uncomfortable all the time. But even with the battle to self-motivate, I still desire to be productive and strive to find a way to contribute to my household.
I have had periods where I have been so ill that I was unable to communicate with my husband. These times included bouts of psychosis – hallucinations, voices, suicidal ideation, delusions, paranoia and extreme stress. If I could sleep at all, it was only for a couple of hours, and I frequently went without eating.
During one episode, that lasted six months, I constantly heard voices, but I was able to cook and clean. Relationships and socializing were confused and difficult because of the distraction of the voices and because of the information they (the voices) would tell me. I thought I heard the voice of God. I believed I was having discussions with God, Jesus and the Holy Spirit. To this day, I have never heard a voice as sweet or as innocent as the one that I believed to be the Holy Spirit. During this time, the longest I have been actively psychotic, it was as if I was living in a world within the world — a place where I am cut off and alone.
I have been in treatment for over twenty years. The first few years of my treatment, I fought the idea of being mentally ill, and I went on and off my medications. Going on and off medication left me in a state of frequent psychosis that would come and go. Including my initial hospitalization, I was in psych wards a total of three times during this period. On two occasions I signed myself in and once I was committed after an attempted suicide. Not taking my diagnosis and treatment seriously put me dangerously close to losing my life. I have followed the advice of doctors for approximately nineteen years now, and I take my treatment very seriously. I look at taking my medications as a life saver – a regimen that has saved my life and increased the quality of my life significantly.
Medications have side effects, though, (weight gain, high cholesterol, diabetes, etc.) and to try to manage the adverse effects of the medicine I take, I try to keep up a healthy diet and participate in physical activities. Occasionally, my weight will creep up for a couple of years, and then I will get back on track, and lose the excess pounds. It is a form of maintenance that I am not perfect at, but I keep trying.
No one with a psychiatric diagnosis can be completely defined by that diagnosis. That is one reason I prefer to be called a person living with schizophrenia, not a schizophrenic. We are all complex people and some of us happen to have an illness, but those of us with an illness are not the illness itself. For me, it is important to keep my existing relationships, have hobbies and interests, and be active with things that both have to do with schizophrenia and don’t have to do with schizophrenia. For instance, I consider myself an activist in the mental illness, dis/ability, and feminist circles.
Being an advocate/activist for people living with a mental illness means I write and try to bring awareness to the topic on a regular basis. Bringing awareness (being an advocate) makes having my illness seem meaningful in a bigger picture. I have had many people write to me and tell me that my words give them hope, and I don’t take being an occasional inspiration for others lightly. Advocacy, fighting stigma, educating and breaking down stereotypes is important work that all of us can do.
Writing is a way to reach others, and is a great therapeutic discipline. I write a column that focuses on art, literature, and mental illness; I am also a blogger on a major mental health site, and keep up a personal blog. But besides that writing, which is all focused on living with a severe mental illness, I also write essays about relationships, marriage, social media, being a woman, friendships, and a wide variety of other topics. I think this provides balance in my life. There are so many things that I would like to concentrate on besides my dis/ability.
I will celebrate eighteen years of marriage to my husband next March, and for almost all of those years that relationship is one of the biggest supplies of joy in my life. Having schizophrenia adds stress to our relationship and requires that we make certain sacrifices to avoid putting me in stressful situations, but it isn’t too different from the chronic illness my husband has that we have to manage as well. Both conditions require the care of doctors, lifestyle choices (like the monitoring of diet and exercise) precautions, and care.
Having the support of my husband has a huge impact on my overall well-being. When I am paranoid, my husband is someone who can usually bring my thinking back to a rational place with some tricks he has learned over time. My husband takes an active role in my treatment and care. He attends every doctor’s appointment with me and monitors my medication on a daily basis. It is also critical to have someone to trust, and I trust my husband completely. We make a good team, but even so there are times and days where we both feel overwhelmed or a little bit beaten by my more persistent symptoms like anxiety and paranoia. During a period when I was actively psychotic, I told my husband I wanted a divorce. Of course, I didn’t know what I was saying, and my thoughts were not based in reality. My husband felt very alone during that period and one of the things we worked on together after that incident was building a network of friends who are aware of my diagnosis. In the future, if I become psychotic, my husband will have support from people who love him and can help him not feel isolated or alone. I’m not the only one who needs support, it is critical for him to feel supported as well.
My diagnosis was a secret that we hid from most friends and family up until recently. Friends, some I have had for over a decade, were surprised by my confession but remain supportive. I have a core group of friends that I try to see at least two to three times a month, and that helps with the social isolation I often choose for myself. I also try to visit with other writers on occasion and frequently have e-mail and social media contact with people who fit into this group. I talk to my mom and dad almost every day, and one of my brothers and I talk a couple of times a week on the phone. I can easily go weeks without seeing anyone but my husband, so having these supportive people in my life helps keep me remain social when I may otherwise choose not to be.
Having supportive people around seems to be the most important part of living well. Besides supportive people, writing and art projects are the two things that help the most with how I feel about my illness, doing something positive with a negative situation, and expressing myself. I think when someone starts out writing about their symptoms, their experiences, their treatment, or anything to do with their illness it helps to get it all out. I would recommend writing to anyone as a part of healing and recovery, but I would also recommend taking writing classes (online or in person) to get better at writing and to write essays, poems, stories, or even a novel that has nothing to do with a diagnosis or illness. There are endless possibilities of what to write about; someone can see a fig tree and create a whole story around its history, or they can research the origins of the fig tree and create an educational piece about that type of tree.
Art of all kinds can be an excellent part of treatment. I have taken up photography, and I try to spend a couple of hours each week looking for interesting pictures to take. Of course, painting, ceramics, drawing, knitting or sewing can all help in various ways. There is something unique about creating and expressing oneself that contributes to overall health. Part of the reason might be that it helps you deal with thoughts and emotions you may not be able to deal with any other way. For myself, I feel very productive which helps with the negative feelings I have in regards to my lack of motivation.
For me, it is important to expose myself to new ideas through books, movies, documentaries, radio, and museums. New ideas help keep my brain from thinking too much about what is going wrong with it and focus on the larger world. Being focused on current events, art or politics can ground me in reality, and it can help me foster an attitude of gratitude and thanksgiving instead of one of self-pity. I don’t want to sit around feeling sorry for myself because I have schizophrenia, and life can be difficult sometimes. Exposing myself to the lives and stories of other people reminds me that we all struggle, and we all suffer. Suffering is not unique to me, or to people with mental illness. My suffering or struggles may not look exactly like someone else’s but, many times, when I read an essay by someone who has had cancer, or survived an assault, or survived a war, I think to myself, “I could never do that. I’m not strong enough to do that.” People reading my story may feel the same way about living with schizophrenia.
The old adage about having everyone’s problems thrown into a basket and then being able to choose which problems you want to live with, and ending up picking your problems over those of someone else, really is true. I am familiar with what it takes to live with, and try to manage, schizophrenia, and I wouldn’t swap my difficulties for someone else’s because I don’t know how to cope with their struggles, I only know how to cope with mine.
I always tell people, “Never give up hope. Things can change any day, and they often do.”
My life is both beautiful and tragic, but the beauty is everlasting, and the tragic is only temporary. I love my life, and I am so happy people, and medication, helped to save it.