Society Shouldn’t Tell Me How To Experience My Mental Illness
When I was first diagnosed with a schizophrenia spectrum disorder, I felt so many things at once. There was relief at finding the reason I was experiencing terrifying symptoms. I felt afraid of what this meant for my future. Shame crawled under my skin because of the stigma. But the feeling that lingered the longest was the feeling that I was somehow lying. I had never and still haven’t ever fabricated or overdramatized my symptoms. But I felt that there must have been some mistake, and not only because of how badly I wished the diagnosis was incorrect. Mainly, it was because my symptoms didn’t line up with what society told me schizophrenia was supposed to be.
I questioned legitimate experiences.
I experience visual, auditory, tactile, and olfactory hallucinations. My thoughts are frequently disorganized, which bleeds into how I talk and act. I have experienced a host of what are referred to as negative symptoms – being unable to exhibit emotions even when I am experiencing them, barely speaking, loss of motivation, and the list goes on. Delusions – check. Cognitive issues – check. Social issues – check, check, and check.
The combination of overlap and independent incidences of my depression and psychosis line up with my diagnosis of schizoaffective disorder in textbook fashion. My diagnosis has been confirmed by multiple psychiatrists. But I don’t hear voices like others do. I’ve never believed the television was speaking to me. I don’t feel as though the FBI is monitoring me. I’ve never been hospitalized, and I am not mired down by severe symptoms constantly.
I thought the differences between myself and others made me a fraud.
Sure, diagnostically, I qualify for the diagnosis hands down. My treatment has worked fairly well and my symptoms and struggles are very real. But I didn’t match everyone else. I wasn’t “doing it right.” Or so I thought.
Society had me fooled.
All through college, I grappled with feeling like I wasn’t “good” at having a schizophrenia spectrum illness. But a few years after graduating, I ventured further into mental health advocacy and discovered a community of people with illnesses like mine that covered not only the symptoms that society tells us people with schizophrenia experience, but also those that I experience, and more.
As much as I hate to admit it, society’s picture of schizophrenia didn’t leave my mind at first.
On a handful of occasions, I caught myself questioning the accuracy of the diagnoses of others with psychosis when they did not match either the symptoms I experienced or those that society declares to be true. Since then, I have been able to shake those doubts and judgements and truly recognize schizophrenia spectrum disorders for what they are – a collection of symptoms that people can experience in a vast number of ways.
When did society become the authority on how to experience a mental illness?
When I was diagnosed, I may have fit the diagnostic criteria, but I was swept away by what society determined psychosis was. For years, I invalidated my experiences over and over by comparing them to what society told me I should be experiencing. But why? Why did the howls of pop culture echo louder than those of psychiatric and psychological professionals and what I read in books on schizophrenia? It took not just meeting a few people with schizophrenia spectrum disorders, but being immersed in an entire community of them before I truly stopped feeling like I wasn’t “doing it right.”
Growing up, I didn’t know anything real about mental illness. All I knew was what the media told me. As a teen, the media was joined by those who upheld those stereotypes. It wasn’t until I was diagnosed that I really saw schizophrenia spectrum illnesses as they are. Though even then, it was hard to let go of a young lifetime of misinformation, particularly because that feed of misinformation never stopped.
What I’ve learned since meeting communities of people living with illnesses and disabilities of all kinds is that society has it wrong most of the time.
Society’s dictation of how illnesses and disabilities are supposed be has a powerful impact on how people in these communities are viewed and also how they view themselves. Though it is true that there are individuals who do match what society preaches, it’s much more nuanced than that, and that extends to all communities. For example, youth can develop arthritis, and yes it is serious. People using wheelchairs don’t have to be completely incapable of walking. A large portion of people with Tourette’s syndrome won’t spontaneously curse at you. Many people with eating disorders are not skeletally thin. And people with schizophrenia don’t all hear voices and our lives aren’t worthless because of it.
So what now?
I am under no fantasy that societal change can be quick or easy, but it is long overdue. No one should have to question valid experiences because society says they aren’t accurate. No one should be told how they are supposed to experience an illness. Because there is no “supposed to” when it comes to living with illness. Your experiences are your experiences. They will fall where they will with society’s expectations and also within the parameters doctors have for diagnoses, but they are real. I cannot represent everyone, even within my own community of people with schizophrenia spectrum illnesses. But I will not stop fighting for our voices to be heard.
Those of us with illnesses can shout louder, but we need those who have the power to amplify our voices to join in as well. Share articles from people with lived experience. Support organizations and groups that assist in that. And second guess the media’s interpretation of illnesses and disabilities, not that of the people who have lived it. Stop telling us what we should be experiencing and listen instead. Society should not get to dictate how we live our lives and interpret our experiences.