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Dealing With Mental Illness Diagnosis Changing To More Severe

I saw a woman today. She was quite distressed. Her diagnosis had been changed from bipolar1 to schizoaffective disorder and she was afraid. Afraid that she would relive her darkest days. Afraid that things would not get better. Afraid she would have more severe symptoms.

It brought me back to a similar time in my past when my diagnosis also was changed from bipolar1 to schizoaffective disorder. For me, schizoaffective had always been questioned as something to rule-out, so it wasn’t a total shock. Still, I was confused. How could it have been wrong?

It can be hard to differentiate psychotic disorders. It takes investigating. I had been manic and psychotic at the hospital so the psychiatrist knew I had a mood disorder. I had predominantly psychotic symptoms. I had psychosis within mood swings, but also at times when my moods were neutral. In bipolar disorder, typically you only have psychosis, if at all, during a mood swing. Eventually, it fell in to place that I had schizoaffective disorder, bipolar type.

To me the news was a bit of a relief. I had been going to support groups in-person and on-line. I liked them and the people, but in some ways, I felt I couldn’t relate. People would talk about frequent mood changes, which were not such an issue for me, and didn’t really know what to tell me about voices and visions.

When I was first diagnosed with bipolar disorder, I read as much information I could find and it didn’t describe me. Now I know it was because it was the wrong diagnosis. The new diagnosis was an explanation for why I didn’t feel I fit in. The members still welcome me, we just are aware of our differences.

The in-person group I belong to is DBSA, Depression and Bipolar Support Alliance. It is for mood disorders. There are few groups specifically for schizoaffective disorder. NAMI Connections support group is for any diagnosis, and Schizophrenia Alliance is a 6-step program for schizophrenia and related disorders. Those are a few groups I am aware of, there are others.

I told the woman I met today, that a label doesn’t change who you are. And, it will help her doctor treat her more effectively. I have schizoaffective disorder, and I know others like me who are doing well. I hope that eased her mind some.

I gave an example, in this post, with schizoaffective disorder, but the same principle applies to other situations when there is a diagnosis change.

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Dealing With Mental Illness Diagnosis Changing To More Severe

Lori Bernstein

Lori has been married over 20 years and is the mother of two teenagers. She has the diagnosis of schizoaffective disorder, bipolar type, along with recovering from alcoholism. She works as a Peer Mentor and volunteers for the National Alliance on Mental Illness (NAMI) and the Depression and Bipolar Support Alliance (DBSA)

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APA Reference
Bernstein, L. (2017). Dealing With Mental Illness Diagnosis Changing To More Severe. Psych Central. Retrieved on March 23, 2019, from


Last updated: 27 Apr 2017
Last reviewed: By John M. Grohol, Psy.D. on 27 Apr 2017
Published on All rights reserved.