On Speaking Up About Symptoms
We were still trying to get my medication right when it happened. Home alone, getting ready for the day, I heard a man snicker at me from the back corner of my bedroom. A chill ran through me like an electric shock. My first thought – No. No, this can’t be happening. Fear caught me in it’s grasp. I needed this to go away so I could go back to my normal life. Motivated by a mixture of fear, denial, and trust, I saw speaking up as my only way out.
I don’t remember how I told my doctor about my first hallucination. It might have been in a voicemail or maybe in person. But whichever way I disclosed this deeply unsettling new symptom, saying something about it and the hallucinations that followed saved my life.
I was lucky.
I had recently begun seeing a therapist and doctor before I experienced my first hallucination. Not that being severely depressed was a good thing. However it did motivate me to finally seek treatment after years of living with depression.
I desperately wanted all of this to go away so that I could go back to the life I had before. I felt comfortable with my doctor, but was still overflowing with anxiety when I told her about the snicker and every symptom of psychosis after that. But had I not done that, my life could have been drastically different.
Studies have found evidence that the earlier someone is treated for psychosis, the higher the probability of a more positive outcome. This could mean fewer, less severe, and more easily managed symptoms among other benefits. And I firmly believe that the immediacy of my treatment has played a major role in my functioning. But speaking up about having symptoms of psychosis is terrifying.
Why is it difficult to speak up?
There are numerous reasons why people don’t tell someone about what they’re experiencing. The duct tape across my mouth was made of shame, fear of rejection, the feeling that I had let people down, and wanting to pretend everything was fine. I ripped it off because I felt supported by my family, I trusted my doctor, and I so desperately wanted to make it go away and knew that required help. But for many others, this is an insurmountable feat. Fear, shame, and lack of professional or personal support can so easily steal your breath. This can lead to someone suffering in silence, often with symptoms spiraling out of control.
But it shouldn’t be like that.
I’ve found that I’m more likely to tell someone about my symptoms if I feel like they will understand and not be anxious, afraid, or treat me like less of a person. For me, this meant speaking up to a select few people who knew my diagnosis and who had been educated about schizoaffective disorder and schizophrenia by myself or through formal schooling.
When I’m struggling with symptoms, I don’t want to have to teach someone about my illness at the same time. I’m not always capable of that when my world is being torn apart. I want someone who won’t be flustered. I need them to be calm, and I need them to talk to me and be compassionate. If they don’t know exactly what to do, that’s okay. Most people don’t. I just need support, not fear.
Making people feel that there is no shame in speaking up and that they are safe and supported is incredibly important. But that doesn’t really make a difference if you have no one who responds with empathy and open arms. We need to create a world where symptoms of schizophrenia and schizoaffective disorder are met with understanding and not judgment, fear, and hate. People need to feel that they will not be abandoned, shamed, or persecuted for simply having a disease. Schizophrenia is not a choice nor does it make you any less human. Yet many people still fear it and respond negatively.
So how do we change that?
Promoting education and understanding of schizophrenia spectrum disorders is vital. If we can take the fear and mystery away, people may be more likely to respond with compassion. But spreading awareness and cultivating understanding across the whole population is a momentous task.
Integrating mental health awareness training into schooling is important at the collegiate, high school, and even earlier levels. Not only does this educate youth and young adults about symptoms, it also helps break down and even get ahead of the stigma. Training for, at a minimum, management and human resources professionals could also be helpful. And, while law enforcement should not be the first responders for crises involving schizophrenia spectrum disorders, the fact of the matter is that in many places they are. As long as this is the case, it is imperative that we train them on how to properly deescalate and interact with someone in the throes of psychosis.
We also need to amplify the voices of lived experience and those with loved ones living with these illnesses.
Classes and seminars are great, but it’s not the same as hearing about it first hand. Putting a face to schizophrenia spectrum disorders can humanize and normalize the diseases in a way that no slide show or textbook can. This holds true even for psychology and medical professionals. We need to not just listen to people with lived experience, but also amplify it.
But where do we start?
Change starts at the individual level, and personal experience is not necessary in order to help make change. Look for opportunities to learn like reading interviews, books on the topic, and stories of people who have direct experience with schizophrenia spectrum disorders and their loved ones. When you come across something that helps you learn and understand, be it a book, an article, or even a social media post, share it. Sharing is one of the simplest ways to show support, but truly does make a difference. You can also support organizations that fight stigma around schizophrenia by volunteering or making donations if you are able.
If someone confides in you about experiencing symptoms, don’t be afraid. Listen without judgement. You can offer support in compassionate words and actions like spending time with them if they are afraid to be alone. Encourage them to seek appropriate treatment. And always remember that they are still the same person they were before the symptoms began.
I thank you for taking the time to learn more and for your efforts to better understand by reading my blog. But I ask you to take it one step farther. Let’s spread the word. Together, we can make speaking up about symptoms something that no one has to fear.
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