- What Is Psychosis?
- Find a therapist to treat psychosis
Key points
- Sometimes our disclosure fears stem more from self-stigma than what others actually think.
- Sharing your experiences is valuable and vital to other peers in recovery.
- Learning of similar experiences helps yours seem less subjective and unique.
- We must tell our stories so we can be seen for who we really are, replacing stereotypes and misinformation.
Finding community among peers is just as important for me as it is for others, regardless of where I am in my cognitive and emotional recovery. Even for someone like me, who leads support groups, does presentations on life after psychosis topics based on my blogs with Psychology TodayandTeva Pharmaceuticals, and speaks in front of crowds, it is hard even for me to meet people with a diagnosis like mine or similar. I love meeting peers because it breaks the chains of stigma and allows us to feel normal and less ashamed of our experiences. I realized even during advanced recovery, when starting to facilitate a support group, that I still had healing to do that was obtainable only through sharing my experiences with peers and hearing stories similar to mine.
I now have connections through support groups, presentations, and people who reach out to mee the most. Often, peers I meet have never met anyone else before with a psychotic disorder and perhaps have never verbalized much about their illness before. I think for most people, being able to speak about a condition that is so marginalized and silenced feels freeing and liberating
The First Step to Joining Community is Reducing Self-Stigma
Sometimes self-stigma and assuming what others might think is a barrier to finding community. Part of finding community includes disclosing in some way your illness and identity, and not everyone is ready for those steps. In virtual support groups I have led, and in my virtual, 12-part presentation series called Life After Psychosis, there have been people who chose to remain without a video feed or audio, and only initials. Even though it was communicated that these presentations were not recorded, I think there might still have been a fear that somehow the presentation could be published online or a picture could be taken, meaning their illness would be discoverable by others online.
I think one of the great benefits of virtual meetings is the ability to create community, meet others like you, and feel more “normal.” It’s a place where self-stigma and fear of disclosure can decrease enough to help you eventually feel ready to speak and reveal your visual identity. Being able to identify yourself can help unlock the stigma that causes us to self-silence and self-censor ourselves. If you choose to remain anonymous that is okay; however, it can be meaningful for others to hear your story and learn more about you as well.
Meeting Others Is a Normalizing Experience
What I hear from others all the time, when I share particulars from my story, is “I feel so much better that I’m not the only person to experience that.” Whether it’s my story of oculogyric crises, getting an unwarranted IVC, or a particular kind of hallucination, people are so thankful I shared it because it normalizes them. I feel the exact same way they do
When a psychotic break happens, most people feel that they are the only person on earth that has experienced it, and like they are some mysterious human anomaly that is being subjectively singled out and targeted. The reason we all feel like this is because we suffer in silence, shame, and secrecy due to stigma. We are sanctioned off in personal silos because of the social persecution of this illness. It means everything for people to share experiences and know that what happened is not a personal, subjective failure, and that certain elements of our breaks are not one-time occurrences in human history.
What most people never get to understand is that almost all elements of breaks are common themes and not unusual, like thinking you’re the antichrist, your room is bugged, people are trying to poison you, or that someone is controlling your mind. Not having community robs us of having normalizing experiences that heal our abilities to trust and believe in ourselves again and want to be ourselves again
- What Is Psychosis?
- Find a therapist to treat psychosis
Community Cuts Through Stigma That Isolates and Shames Us
I have this dream of an “I have schizophrenia too” day. Since there are about 28 million of us currently, what if one day of the year, we all raise our hand, and say “yes, I have schizophrenia too”? People in our world would see that we are not just people who others can’t identify with or understand. People would see that we all exist among everyone, every day; we are parents, coworkers, business owners, academics, and other community contributors. We are socially and politically framed as total “otherness”—merely a liability and burden, and even worse, unpredictable and dangerous.
As long as we self-censor and hide, never forming community that strengthens us and helps us feel empowered and less ashamed, the government, interest groups, and media get to tell our story the way they want to tell it in ways that are only beneficial for them. As long as this disease mostly remains faceless, nameless, and voiceless, we can be framed in ways that harm and endanger us. Only through building community can we force a reckoning between the fables and tales currently spun of what people with schizophrenia are like and the reality that we are, indeed, just like everyone else. We are brave for surviving this illness and deserve compassion instead of fear and reproach.
Psychosis Essential Reads
Life Before and After Treatment for Schizophrenia
Is Cannabis Psychosis Riskier Than Drug-Induced Psychosis?
Understanding Why Community Matters and Where to Look
Another barrier to seeking community comes from the fact that most people, like me, do not realize what the benefits of having community will be until we happen into a community-like setting, like a support group, and realize how helpful it is emotionally. For the first 8 years of my recovery from my last psychotic break, I did not know support groups existed, nor where to look for them
The National Alliance on Mental Illness (NAMI) is where I found the Connection Support Group (CSG), and this program is an excellent way of finding community. It was my first session in this program where I finally met the first person of my life that has a similar diagnosis to mine, schizoaffective. It meant everything to me. NAMI has CSG programs that are free and virtual in every state and often at the county affiliate level
I highly recommend to peers in both early and later recovery from psychosis to try one of these free, virtual support groups. It is my hope that more people know about these support groups earlier than I did and can benefit from them at earlier stages in recovery than I did
