To Tell or Not to Tell

It can be hard to disclose hallucinations to anyone, even your doctors.

Posted Oct 08, 2019

Source: Pixabay

Schizophrenia affects one in a hundred of us. Unfortunately, rarely do we hear reports of good news about persons with schizophrenia making significant contributions to our society, although many people with schizophrenia and all other brain diseases do contribute, and enjoy life every day.

Instead, we hear the worst. In the face of mass shootings and other crimes, those who misunderstand schizophrenia may cast the blame on people with our diagnosis.

Because of the stigma, it is often difficult to decide if or when we should disclose the illness to close friends, colleagues, and even family members.

For me, I found it hard to disclose what I was experiencing to my doctors, members of my treatment team, and my family. I finally opened up to my doctor about the voices I was hearing about three months after my diagnosis. On medication, my mind was clearer, and I was developing insight into my illness, which led to my disclosure.

At that point, the medication had eliminated all my visual and tactile hallucinations, and most of my auditory hallucinations; however, the voices in my mind remained as a loud running commentary.

My initial lack of insight into my illness is common in schizophrenia. I knew I was hearing voices but thought it was impossible that I could be mentally ill. I convinced myself that everyone heard voices like I was hearing and that the important thing was not to talk about it.

The disclosure of my symptoms to my doctor was a major breakthrough in the treatment of my illness. Once I was willing to buy into treatment and listen to what the doctor had to say, he had the opportunity to tell me some important things I needed to know.

First, I needed to know why I had to take medication. I was unaware that, on the right medication, and with a commitment to take it faithfully, I might be able to return to college, hold a job, and build a meaningful social life. The medication was supposed to help me reclaim my life.

I needed to know that antipsychotic medications can have potential side effects. Once I was honest with my psychiatrist about everything, including my symptoms that had not gone away on medication, and the side effects I was experiencing, we were able to discuss a more tolerable treatment plan.

Finally, I needed to know that antipsychotic medications are not like other medications that can be completed and restarted later on with the same efficacy. Every time I stopped my antipsychotic and restarted it, I took the risk that my medication might be less effective.

If one of my doctors determined that I needed to switch to another medication, it needed to be done carefully. While the new medication was titrated up, the old medication would need to be carefully titrated down.

I wish my first psychiatrist had sat down with me and educated me about the medication and the possibility of recovery, but at first, I would not listen. In fact, due to delusions and my other symptoms, I was unable to process such information fully. When I was picked up by police and taken for my first evaluation, my clothes were dirty. The voices distracted me, and I couldn’t carry out a normal conversation. I was absolutely convinced I was not ill.

I don’t remember when or where I was when I was first told and fully comprehended that I had schizophrenia. In fact, I don’t remember my first doctor talking to me about my illness at all. In hindsight, I see my first doctor was a good doctor, and he did the best he could.

I would encourage clinicians to go out of their way to be not just a doctor, but to be a mentor, a coach, and a friend. Compassion is the key to helping your patients disclose as soon as possible, and education is vital in sustained recovery.