Schizophrenia Is an Invisible Illness

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On a day-to-day basis, we walk by countless people. We see all sorts of faces—happy, sad, concerned, and joyful. There are people in a hurry and people walking slowly. With a quick glance, we cannot know what their lives are like, what they are experiencing, their medical conditions, or family problems.

One in 300 people throughout the world will develop schizophrenia. People with schizophrenia who are living in recovery (commonly taking antipsychotic medication) do not stand out in the crowd any more than people with diabetes or those struggling with cancer do.

One of the things that has most surprised me over the years is the number of people living with schizophrenia I meet who are thriving with healthy, balanced lives. Their symptoms are in remission or near remission thanks to faithful medication compliance. I’ve met people who work as librarians, social workers, actors, nonprofit executives, chefs, and even law students. Despite a diagnosis of schizophrenia, they live with fulfillment and joy. They are a part of the normal flow of life we describe as a community. These people continue to live with schizophrenia, but their symptoms are in full remission or nearly so (1).

The harmful effects of stigma on people with schizophrenia

Unfortunately, the long-standing, heavy stigma of the word schizophrenia continues to negatively frame and define public perception of all people with the diagnosis. The stigma against schizophrenia may lead some to believe that people with schizophrenia do stand out and could never blend into normal society. The negative and basically hopeless stereotype continues despite very significant advances in schizophrenia treatment.

When I was entering the earliest phase of schizophrenia (referred to as the “prodrome"; see reference 2), my parents did not recognize that schizophrenia was the underlying problem. My mom, who had attended nursing school in the 1970s, had only seen the sickest and most disabled people with schizophrenia. Back then, medications were often not as effective as some of the medications today. The older drugs had a high chance of causing involuntary movement disorders, including tardive dyskinesia and severe Parkinsonian movements. The people my mother saw living with schizophrenia in the 1970s did not typically blend into a crowd. Many lived in a world of hallucinations, looking blankly into the distance or having conversations with the voices in their minds.

In 1999 when I was developing schizophrenia, my behavioral manifestations presented as fairly normal compared to other college students. At first, my life was out of balance. I could not stop studying or working long enough to take a break. I preferred being alone and really had no social life. Then I lost interest in having a relationship with my family and drew away from them, probably in part because my grades were dropping, and I was embarrassed by it.

I found out later on that my parents believed I was going through some sort of a latent adolescent phase, actively seeking to become a much more independent adult. As a whole, having less interest in my family was still within the normal range. My falling grades were normal as well. Many students go through a period of burnout which they eventually overcome.

Years later, when I was fully estranged from family and living outside in a churchyard, undiagnosed, I stood out from society very distinctly. I always told myself I looked normal or that I was just special, but that was unrealistic. As I wandered around the university campus community, spending hours in parks and looking for discarded food from the garbage, to this day I wonder how many people noticed me. I was so young. I had once been a student in good standing and was still college-age. I’m sure some questioned why I didn’t simply get a job. The reality was that my mind was too broken to work any job at all or seek help. Due to the loud and distracting voices in my mind, I could not focus for even a few minutes.

Stigma says that all people with schizophrenia, regardless of treatment, live with active psychosis. In reality, there is a difference between persons with schizophrenia who are untreated and treated. This is the case for most illnesses in society.

I remember my life in recovery before I published my memoir in 2014. Until then, I kept the illness mostly to myself. I was a face in the crowd, attending college again and scoring high grades. After I disclosed to a few people about my schizophrenia, I received a very poor response, with a lack of understanding.

Today, through my memoir Mind Estranged, I openly share the details of my life, which has opened doors for me professionally and personally. But many people I encounter in my journey who are in full remission or nearly so have no interest in telling their story. They want to leave schizophrenia behind them and move on. I respect them for making this choice. Each person struggling with severe mental illness has to decide whether or to what extent they wish to disclose their medical condition.

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As people begin their journey through schizophrenia following an initial diagnosis, I share with them the truth: People who have recovered from schizophrenia are everywhere. There is hope. Many enjoy their lives, just like you and me. They work, volunteer, manage households and enjoy family and friends. Today, thanks to modern treatments and with faithful medication compliance, most people will recover to some extent, and many will recover fully.

I am proud of the remarkable people I know with schizophrenia who make a contribution to society every day and live with purpose and joy, thanks to effective modern treatment.