Living with schizoaffective disorder for the past twelve years has been a precarious journey which has taught me a lot. When I was first diagnosed I was afraid of hearing the diagnosis and I was afraid of the stigma surrounding it. I didn’t want to think that I was any different than anyone else. I soon learned that I had a lot of trauma I had to confront and neutralize however, along the way I realized I am just as human as everyone else.
When I was first diagnosed I was afraid of hearing the diagnosis and I was afraid of the stigma surrounding it. I didn’t want to think that I was any different than anyone else.
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Being someone who still has symptoms of schizophrenia and bipolar disorder who is very high functioning is a different position to be in. Most of the people in my life don’t know about my diagnosis and I’m able to function well enough where I own a home, I have two jobs, I’m a writer, and I have a vibrant social life. However, while socializing with others there’s a lot of stigma that gets thrown around which I can’t necessarily speak out against at times. I usually only let the people closest to me know about my diagnosis because I understand they won’t treat me differently for it. This is why I usually keep quiet when people use derogatory terms regarding people with mental health issues. Saying something to stand up for myself in these situations usually indicates that I have a vested interest in mental health which can lead to some awkward questions for me. I tend to think it would lead to diagnosis disclosure which is not usually my goal.
I can only speak for myself but the times I get insulted and my feelings are hurt are when people single out those with mental health disorders. When someone says something like “he belongs in an asylum,” or “he’s a schizo” after someone is socially dysfunctional and/or acting awkwardly; that really hurts my feelings. This hasn’t been said about me to my face but I usually hear it when people around me who don’t know about my diagnosis are talking about others. I feel it in my heart and I can’t say anything against it because I don’t want people knowing about my diagnosis. I don’t want people to exclude me from the group for having been hospitalized twice and for having a schizophrenia type diagnosis. It hurts because I didn’t know how to solve the problems I was having with my mental health when I was having them. I didn’t know how to solve my issues when I was hospitalized and I still have issues from schizoaffective disorder that I’m figuring out but I don’t quite understand. These people who insulted me took their mental health for granted and estranged me from the group without knowing they were doing so. Without knowing it, they were basically saying the things I had been through made me a less rational and less healthy and less likable human being and I didn’t belong with the rest of the group of people who could be deemed “healthy”. There was an “us and them” and they were us and I was them and I felt excluded. The things I least liked about myself and didn’t know how to change were keeping me separated from the way I wanted to be.
However, there are terms that are used that don’t insult me too. There were also times where my friends who knew about the diagnosis were afraid to use certain words like crazy and psychotic. This was more immediately after my diagnosis but the thing they came to realize was that I also use the word crazy. I usually refrain from the word psychotic unless I’m describing a medical condition. I’ve found that euphemisms can be a good thing. Sometimes with language there are only so many ways to describe the way someone is acting or the way a situation is and people just blurt out these words, myself included. Having been through two psychotic episodes where I was nearly homeless, nearly starved to death, thought I was going to be the next messiah and save the world, and where I had auditory and visual hallucinations I don’t take offense to these words and I don’t do so intentionally.
Although there were times where it was painful to hear these words I’ve gotten healthy enough where I don’t necessarily associate myself with words like crazy and/or psychotic. I realize there were times where I was very much crazy and/or psychotic throughout the day however, I can’t live in a world where someone else’s word use is restricted by my own experiences. My measuring stick for the use of words like these is basically if someone isn’t intending to insult me for having a mental illness then I don’t take their word choices such as psycho and crazy offensively. It seems ironic that someone with a mental illness wouldn’t stand against such tactless word choice at times, however, it was alleviating for me to hear others speak to me the way they would normally speak to someone who doesn’t have a mental illness. Using these words around me meant that they didn’t consider me crazy and they didn’t consider me psychotic. It meant they accepted me for who I am which is a rational and highly functioning individual. Most importantly it meant that they weren’t excluding me from the group by their word choice or denouncing me as a lesser person for having a mental illness. It was the exact opposite where they considered me so much a part of the group and their friend that they could use these words without insulting me because they knew that I knew how much they cared for me. I almost felt not using those words around me would be a form of excluding me because they wouldn’t do that with anyone else. I also wasn’t wasting energy getting angry at people when they had no intention of hurting my feelings. With word choice some people were simply limited with language and had no other way of describing what they had experienced or seen.
Allowing others to use these words around me created an inclination to consider myself a healthier person. If other people were doing crazy things that I wasn’t doing this meant that I was being rational. It proved to me that even though there was a time I had been in a state of psychosis for several years I was no longer in that time period. Allowing myself to label some of my past actions as crazy helped me to disassociate myself with my past delusions and past traumas. Thinking I was going to get a letter to Hogwarts (was true and I laugh about it) but it was also considerably crazy, however, I no longer expect that letter therefore I’m a more rational human being. I now like to joke it’s because of my age and not because of my magical ability.
Most of the people in my life don’t know about my diagnosis and I’m able to function well enough where I own a home, I have two jobs, I’m a writer, and I have a vibrant social life.
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I lecture about my experiences with schizoaffective disorder a lot and a commonality I’ve experienced is that people become tentative to ask me questions about the disorder. I always start by saying you can ask me anything and if I don’t want to answer the question I’ll just ask for the next question. Some people are still very tentative and I find this to be burdensome, not necessarily for me but more so for them. The reason I speak about intent with word choice is also because I speak about it with questions. If someone doesn’t intend to hurt my feelings with a question I decide not to be offended by what they say. When I speak to people who are initially tentative to ask me questions I feel some of it is a self-consciousness that they’ll say the wrong thing and be labeled as socially intolerant. This fear sometimes creates an overly self-conscious state of mind for some of these folks and they are so afraid to say the wrong thing that they don’t say anything at all. Whenever someone asks a question that’s a little over the line or could be considered offensive, I don’t chide them or put them down. I simply answer the question to its truest intent. I don’t want people to be afraid to use the wrong language when they’re asking me questions to learn more about how to help people with my same disorder. I don’t want people to become so overly self-conscious that they accidentally say things they normally would never say. For me, one of the best ways of helping stigma to be erased is by allowing people to stumble and spin their wheels with me and with questions they ask me until they realize they can ask me anything they want. I want them to feel comfortable talking about issues that aren’t necessarily their own and not having to fear insulting me for using the wrong choice of words. I want the dialogue to be an open dialogue where we can address people’s concerns and considerations openly and honestly and help them to learn. Schizoaffective disorder is a very difficult thing to understand if you haven’t experienced it, therefore generating more open dialogue about it is the best way to quash stigma. If someone is afraid to ask me a question that they may feel is prejudiced, how will I ever get rid of their misinformation if I never know about it. It simply would never be addressed and it would dwell in a place that hampers that person in their interactions until it finally gets addressed or maybe never does.
I also want people to be able to hang out with me and use the exact same language they would as if they were with people who didn’t have any diagnosis. To me, them using this type of language around me is more accepting of my condition and it’s more true to the diagnosis. Sometimes it helps me to forget I even have a diagnosis which is something I enjoy doing frequently. There are times where I still have hallucinations and other symptoms however, it’s not all the time. And having symptoms of schizoaffective disorder that can be labeled as crazy and/or psychotic doesn’t mean that I am crazy and/or psychotic overall as a person. In fact it categorizes craziness and psychosis as a human condition that happens for all people, with or without a diagnosis because they use these words to describe all people and not just a particular group of people such as people who have psychotic disorders. The words simply describe a state of being during a particular moment in time, and they don’t single me out in any way shape or form for having a diagnosis of schizoaffective disorder.
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