During my mental health journey, I originally received a schizophrenia diagnosis
It sounds strange, but I was a little excited when I received the schizophrenia diagnosis. Not because I wanted to have schizophrenia, but because now I had a reason for why these things were happening to me. I had documented treatment methods. And it was something I could research and learn more about. That was something that was very important for me. Possessing knowledge about it made me feel like I had more control at a time when my world was spinning out of control.
The diagnosis also crushed me. At that point, all I really knew was the stereotype and the story of my uncle with schizophrenia who is unable to live independently. I feared that I would never be able to even come close to living the life I had always expected to live. Part of me gave up on myself immediately. Another part of me fell into denial. But the remaining part of me refused to give up hope. That was the part that kept me going. It was my sole motivation to follow my treatment regimen and keep living.
Right when I was starting to accept my diagnosis, it changed
My family and I bought books about living with schizophrenia. We researched the disorder. And then the diagnosis changed without warning: schizoaffective disorder. I felt a little deflated. Here I had hyped myself up preparing for life with schizophrenia, and now it’s something different? And it was something that I’ve never heard of before. I turned to the books we had bought. But I found nothing but short mentions and basic descriptions of the diagnoses and the debate surrounding it. I turned to the internet and came up with not much more than that. It left me feeling profoundly lost. I almost felt dirty or dismissed, like I wasn’t good enough for a diagnosis of schizophrenia.
The schizophrenia diagnosis gave me a sense of security because I knew what it was, how it was treated, and heard stories from those who lived with it. I didn’t have any of that with schizoaffective disorder. We didn’t know what kind of outcome there might be, and I couldn’t find anyone who shared the diagnosis. I felt so isolated. Logically, I knew that I was not the only person in the world with schizoaffective disorder, but it truly felt that way sometimes. I desperately wanted to know that there was someone else out there who could understand what I was going through with this disorder. And those that I found were people living with schizophrenia.
Are schizoaffective disorder and schizophrenia the same?
You may have seen myself and other advocates using “schizophrenia” and “schizoaffective disorder” together and sometimes interchangeably. Why is that? Are these two separate disorders or not? The answer, right now, is yes.
The controversy
The fate of schizoaffective disorder as a unique disorder has been a hotly contested issue for many years, and still is. Until 1980 the the most widely used diagnostic manual in the United States, the Diagnostic and Statistical Manual, actually listed schizoaffective disorder as a subset of schizophrenia. Schizoaffective disorder is often put on a spectrum between bipolar disorder and schizophrenia, with researchers and clinicians debating whether it belongs on one end or the other or as a standalone disorder in the middle as it is now.
When I first learned of the controversy, I remember thinking that if it ceased to be a diagnosis, what would that mean for me? For me, having a diagnosis made the disease tangible and manageable. It made it real. Would I have to start from scratch again?
How are they alike?
People with schizophrenia and schizoaffective disorder both experience symptoms of psychosis like delusions and hallucinations. Both depression and bipolar disorder can also come with symptoms of psychosis referred to as psychotic features.
Along with sharing the symptoms of psychosis, there is also evidence to suggest that schizophrenia and schizoaffective disorder also share physical changes and abnormalities in the brain. In the case of both disorders, both good and poor outcomes are possible. This means that some people will be able to manage symptoms and function highly, while others may have more difficulty managing symptoms and functioning in daily life.
So what’s the difference?
What sets schizoaffective disorder apart from mood disorders with psychotic features and schizophrenia is the timeline and which symptoms play a larger role. While the mood symptoms must be around for the majority of the time, symptoms of psychosis like those of schizophrenia also need to continue for at least two weeks in the absence of mood symptoms.
In comparison, any mood symptoms experienced by someone with schizophrenia won’t play as big of a role in their disorder. In the case of depression and bipolar disorder with psychotic features, the psychosis symptoms happen almost exclusively with mood symptoms. For those disorders the mood symptoms also must be the most prominent symptoms. Schizoaffective disorder is also more rare than schizophrenia. Only 0.3% of people are affected by schizoaffective disorder. For schizophrenia, about one in 100 people are affected.
Some say that schizoaffective disorder has a better prognosis than that of someone with schizophrenia. However, that’s not true in all cases. Many view prognosis as very individual. There are so many factors that come into play whether it’s schizophrenia or schizoaffective disorder. This includes things like age of onset, severity at onset, and how quickly someone received treatment. It doesn’t necessarily mean those with more positive outcomes haven’t suffered though.
Why do so many of us with schizophrenia use the terms together or interchangeably?
For both schizophrenia and schizoaffective disorder, the symptoms of psychosis are the same. Those of us with schizoaffective disorder often explain the diagnosis to others as a combination of schizophrenia and a mood disorder. This can be a helpful way to explain it because the majority of people have never heard of schizoaffective disorder or understand psychosis, though most have at least a basic knowledge of schizophrenia. Sharing so many symptoms also means that people with schizoaffective disorder and schizophrenia go through similar experiences. Both disorders also face a great deal of stigma in part because of these shared symptoms of psychosis. These shared experiences make it easy for us to relate to each other.
Coming together
It took time, but I have become comfortable with my my schizoaffective diagnosis. Having a name for what I was going through was helpful. But over the years, I’ve learned to focus more on my experiences and less on the word. Connecting with people with schizophrenia and hearing stories of others who live with that diagnosis was crucial to me accepting my diagnosis. The differences in the diagnoses didn’t matter to us. For many with either diagnosis, the symptoms of psychosis are by far and away the most difficult to understand and live with. It made me feel less alone to know that I wasn’t the only one who struggled with such stigmatized symptoms. It gave me hope.
Those of us with schizophrenia and schizoaffective disorder have formed a community of sorts surrounding shared experiences with psychosis, fighting stigma, and spreading hope. Whether you have schizoaffective disorder, schizophrenia, or a loved one with one of these diagnoses, what the psychosis community wants you to know is that you should never give up hope.
Katie Sanford is a mental health advocate based out of the Chicago area who lives with multiple mental health disorders including schizoaffective disorder. Katie uses her story to break down the stigma surrounding mental illnesses like schizoaffective disorder and offer hope to those with diagnoses and their loved ones. She does this through speaking, writing, and her blog Not Like The Others.
Sources
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Parker, Gordon. “How Well Does the DSM-5 Capture Schizoaffective Disorder?.” Canadian journal of psychiatry. Revue canadienne de psychiatrie vol. 64,9 (2019): 607-610. doi:10.1177/0706743719856845
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