Overcoming Condition-Specific Barriers: Facing Anosognosia

Nowadays, people tell me I have a high degree of self-awareness and insight into my mental health. However, this was not always the case. For many years, as I battled schizoaffective disorder, I had no idea I was experiencing delusions, hallucinations and paranoia.

I would spend hours and whole afternoons exploring my “inner life” — a behavior I understood as introspection. I did not realize that I was actually spending hours ruminating and engaging in my psychosis.

My psychotic thoughts shrouded me in a safe oblivion, which others unintentionally encouraged through their silence. I believe it was this lack of confrontation from others that prevented me from recognizing my truth for so long. Ultimately, that lack of insight (also called Anosognosia) into the severity of my condition was a huge barrier to receiving adequate treatment.

I Believed I Was Simply “Special” and “Different”

At 17, I began hearing and seeing things and that no one else heard or saw. To make matters worse, I spent significant time talking to a relative, who most likely had schizophrenia as well, about our delusions and hallucinations. She would take me driving, and we would disappear from my house for hours. To my family’s knowledge, I was just spending time with my beloved relative. Little did they know, she was convincing me that I was simply special and steering me away from recognizing I might have had a mental health condition.

During this time, I began withdrawing from my peers, and my social life diminished drastically. I wandered aimlessly among my own thoughts, left to my own devices for long hours in my room. I would cry, listening to the same depressing song on repeat, engaging in suicidal ideation.

The isolation was a two-way street: The people around me withdrew as well, likely in response to my sudden, drastic behavioral changes. I cut off all my hair. I stopped grooming myself completely. I was under the impression that my actions, which I now know were based on delusions, were positive, “cool” measures. I told myself it was cool to not look like myself.

In the process, I lost my connection to my gender, to which I now experience so intimately as a cisgender woman. I became totally detached from what made me myself. While I was always a girly girl growing up and cared a lot about my grades, I rejected those things during this period.

At the time, I felt that this behavior was simply an expression of my individuality. But the truth was, any feeling of connection to myself made me feel too raw and vulnerable.

I Faced the Consequences of Not Understanding My Treatment

My psychiatrist during my teenage years prescribed me an antipsychotic when I was 17; however, he did not tell me exactly why I needed it.

During the five years that I was on this medication, I developed twitching muscle spasms and gained a significant amount of weight. However, I was hardly aware of what was going on with my body. I didn’t connect the dots until I had my first boyfriend in college, who made me aware of the severe side effects associated with the antipsychotic I was taking. Since he had not known me before I was taking my medications, he assumed I didn’t need them. He urged me to go off my medication, and I agreed, since I didn’t even know why I was on the medication to begin with.

Soon after, I started talking to him and my family about how I was in communication with aliens. I posted alarming statements online. I was told I was manic. I was told I needed help. But I still struggled to internalize that I had a problem. That is, until I finally got the help I needed from a new psychiatrist when I was 23.

The new practitioner diagnosed me with schizoaffective disorder. He spoke to me like I was in control of my illness and my fate. Even though I was reluctant to go back on an antipsychotic medication, he walked me through my options and the risks involved with each one. Over time, he made sure I understood I was experiencing psychosis and that, left untreated, I could be a danger to myself and others. I agreed, and I have taken an antipsychotic ever since.

I Finally Understood My Own Symptoms

I was unlucky in some ways; the conversation I needed to have about my illness didn’t take place until 10 years after I first sought mental health treatment and five years after I started experiencing symptoms of the disorder. I was left in the dark, suffering in oblivion. During that time, no one who had the appropriate perspective gave me a chance to gain an understanding of how my illness affected me. Many people in my life, it seems, were afraid to tell me I had a problem (or they were confused about what the problem really was), leaving me powerless to help myself.

However, I still consider myself lucky. I am grateful that my child psychiatrist prescribed me an antipsychotic as a mood stabilizer — that turned out to be early treatment for my psychosis, which is key to success and recovery.

I was also lucky to find a psychiatrist who helped me gain the insight I needed. I know from my own family history (and from working with people with mental illness) that there are mental health professionals who believe people with psychosis do not have the capability to be self-aware. I am grateful to have found a psychiatrist who believed otherwise and made such a big difference in my life.

My life has been so much better since I received the appropriate treatment and started the path toward recovery and stability. I am now attending graduate school. I have worked for several reputable organizations. I live on my own (with two dogs). I’ve written articles for a number of publications about my journey, and I am a presenter for NAMI Ending the Silence and NAMI In Our Own Voice.

Now, I lead an intellectually rich life in my studies and in my career — all because someone took the time to tell me the truth and give me a chance. If it were not for that chance, I might have struggled with lack of insight into my symptoms, and therefore, inadequate treatment, forever.

I hope we all give people with mental illness the chance to recognize that they need help and, in turn, give them the opportunity to find the best possible care for them.

Sarah Myers is currently finishing her Master’s degree in behavioral neuroscience. She interns with the American Psychological Association (APA) and plans to pursue a career in science advocacy. She has written several articles on mental health, which have been published on MSN, Yahoo!, The Mighty and more. You can find her on Twitter and Instagram at @sarahanmy. To follow her work, visit sarahanmyers.com.