Don’t call individuals Schizophrenics

Photo by Warren on Unsplash

Why do we define people with mental illness by their diagnosis? That is not who they are. They have schizophrenia — they are not schizophrenics.

Individuals with mental illness have a brain disease just like someone with dementia, Alzheimer’s, epilepsy, or Parkinson's. Still, stories in the media, movies, and other outlets describe people as schizophrenic. We need to stand up to this misrepresentation which comes from ignorance. The individual does not have a split mind, the word’s literal meaning. They have been torn from reality.

I don’t go around waving to my friends with diabetes saying, “Hey diabetic, how are you doing?”

I don’t look at the women with breast cancer and see them as their disease. Nor did I think of my mom when she fell prey to dementia as her illness. Instead, my heart pained as I watched her mind wither. I don’t call my son a schizophrenic, he has schizophrenia.

So what will it take to educate society and remove this label and stigma? Ongoing conversations.

When my son received a diagnosis of schizophrenia, I thought he was given a mental health death sentence. The worst of all possible outcomes. I went into shock and remember bracing the desk in my office as the doctor over the phone said, “I am leaning more toward schizophrenia rather than bipolar disorder because of his psychosis.”

I recall asking, “How can that be? He isn’t hearing voices,” which was all I knew about the disease at the time.

The psychiatrist explained that wasn’t necessarily the case.

After I hung up, it took time for my breathing to normalize and my head to clear. We were in the fight of our lives and I refused to let it destroy my son. I had to help him.

I delved deep into the world of mental health. I found guidance from various organizations that focused specifically on severe mental illnesses — schizophrenia, schizoaffective, and other psychosis disorders.

Nonprofits such as the Treatment Advocacy Center and Schizophrenia & Psychosis Action Alliance emphasize that “schizophrenia should be treated like any other neurological illness.” Without proper treatment, an individual with these disorders will decompensate. The clarity and functionality of their brain will weaken. They will physically deteriorate, too.

I didn’t understand that mental illness wreaked havoc on the mind and body. But it’s all intertwined, which in hindsight makes sense.

I joined the National Alliance on Mental Illness, known as NAMI. The largest mental illness advocacy grassroots organization in the country that helps families like mine and individuals through support, education, and services. I went to family support group meetings and took a family-to-family course to learn how to deal with my son’s psychosis, delusions, extreme mood fluctuations, and struggles with his cognitive, executive functions. I wasn’t alone in this fight.

I began to understand that the neurons in his brain were misfiring. That neurotransmitters such as dopamine and serotonin were functioning differently for him. They were out of wack. I learned there were antipsychotics that could help improve his thought processes. There were various types of therapies including Cognitive Behavioral Therapy that could help to retrain the brain. The brain has an amazing ability to rewire itself when proper therapy, treatment, and support are provided. This is known as neuroplasticity.

I would be remiss if I didn’t point out that there are two camps on involuntary treatment. One group is vehemently opposed to any medication or hospitalization without consent. I sit firmly in the other camp. Our family saw no other option.

When the healthcare system abandoned my son and essentially dumped him on the streets untreated to live in squalor, getting him out of this hellhole and hospitalized was paramount. His psychosis was so deep, that the odds of survival were slim.

As my knowledge expanded, my lens on my son’s erratic and delusional behavior widened. I understood his actions were not his fault. I recognized that the anger and severe mood swings resulted from a brain disease that had annexed his mind and gone haywire.

There were times when his behavior turned to rage and terrified our family, the situation fueled by an inability to get him into treatment. But even then, he wasn’t a schizophrenic. He was my son enduring a loathsome brain disease.

In the eyes of a stranger, he appeared frightening. But I, his mother, saw someone thrown into purgatory.

This is what schizophrenia does to a soul. But there is hope.

After successful hospitalization and proper medication, his illness began to recede. It took months for his brain to stabilize and the insight window to crack open. He wanted to understand why his mind had racing thoughts. What caused such unexplained anger and how would he live with such a disease? For years he had been confused, lost, and terrified. Who he had been and who he had become were a shock to the system. He had to right an unthinkable wrong.

He needed help understanding the voices in his head — which did eventually manifest as he became sicker — were not controlling him. He could control them through therapy and inner strength.

The doctors and behavioral health staff were open and honest about the severity of his disease. They provided support and explained ways to manage his life like others with a chronic illness. They didn’t sugarcoat it. They provided tools.

After years of working on his healing, my son graduated from college and has a part-time job. He has purpose and a friendly, supportive community at work.

He stays mum about his illness, knowing intuitively people would eye him differently. Schizophrenia still has a long way to go before society removes the discriminating stain.

Yet, if people saw schizophrenia as a brain disease, not some maniacal person this would be a start. Those with the disease deserve compassion. They didn’t cause this genetic upheaval. They were dealt the short straw.

My son doesn't look any different than you or me. He helps anyone who needs a hand and when he sees someone living on the street mumbling to no one, disheveled and psychotic he understands their pain.