Many People Who Hear Voices Do Not Have Schizophrenia

Did you know that I was not originally diagnosed with schizophrenia, even though I was hearing voices? This is actually more common than one would think! To be diagnosed with schizophrenia, according to the DSM-V (Diagnostic and Statistical Manual-5):

Two or more of the following, each present for a significant portion of time during a 1-month period (or less if successfully treated). At least one of these must be (1), (2), or (3):

A.

1. Delusions
2. Hallucinations
3. Disorganized speech (e.g. frequent derailment or incoherence)
4. Grossly disorganized or catatonic behavior
5. Negative symptoms (i.e. diminished emotional expression or avolition)

B. For a significant portion of the time since the onset of the disturbance, level of functioning in one or more major areas, such as work, interpersonal relations, or self-care, is markedly below the level achieved prior to the onset…

C. Duration: Continuous signs of the disturbance persist for at least 6 months. This 6 month period must include at least 1 month of symptoms (or less if successfully treated) that meet criterion A (i.e. active phase symptoms) and may include periods of prodromal or residual symptoms. During these prodromal or residual periods, the signs of the disturbance may be manifested by only negative symptoms or two or more symptoms listed in Criterion A present in attenuated form (e.g. odd beliefs, unusual perceptual experiences. 

According to the Mental Health Foundation, one in ten people will experience auditory hallucinations in their lives. This can happen for many different reasons including: trauma, stress, extreme hunger, sleep disturbance or lack of sleep, or from recreational drug use, or even as a side effect of prescribed drugs (if this happens to you PLEASE talk to your doctor before it gets worse).

When I first experienced psychotic symptoms, I did not (yet) meet all of the criteria for schizophrenia. I was first diagnosed with psychosis risk syndrome, later, prodromal schizophrenia, and then (a couple years later) schizophrenia. The DSM-V defines psychosis risk syndrome as “patients with subsyndromal or attenuated positive symptoms at high risk for developing frank psychosis.” This meant, for me, that while I was experiencing symptoms such as hallucinations and disorganized speech, I was only at risk of developing schizophrenia. Technically, if medication and therapy (cognitive and occupational) worked in treating my symptoms, I would have never received the diagnosis of schizophrenia (but the risk would always be there). Unfortunately for me, this did not happen, and my diagnosis was officially updated in the spring of 2021/22 (I don’t remember exactly when). 

I think when we think of people who hear voices, you think of dangerous killers, such as portrayed so often on TV/film, or people who are unhoused and may or may not be abusing drugs or alcohol. This is simply not the case. If I wasn’t so open about my mental health situation, you may think I was a bit odd (people usually think this anyway, I fully admit I’m a weird dude), or maybe just “going through something” when I am experiencing active psychosis. I am very likely NOT the only person you have met who has schizophrenia or other psychotic disorders. Out of necessity and stigma, we are forced to hide in plain sight. As an aside, this is the case with many transgender people, too. As a result, you can never truly know what someone is thinking or feeling, seeing, or hearing, which means you should be kind, patient, and understanding with people.