By Katherine Ponte, JD, MBA, CPRP
Stigma had a lot to say about me. “She’s bipolar. She’ll always be sick. She can’t function normally, work, make decisions or take risks.” It reduced me to a child. It destroyed my self-esteem and self-worth. It made me feel hopeless and helpless. Because of this, I refusedmy diagnosis, help and treatment. I lost a lot of years to it – not to the illness itself, but to the struggle with stigma.
Stigma can be harshest for those of us who experience psychosis. Society often views us and portrays us to be the “most dangerous, unpredictable and least likely to recover.” We are often the scapegoat for social ills like gun violence. We are sensationalized and generalized in the media. It makes us feel alienated and misunderstood.
Even some doctors hold stigmatizing views against those of us with severe mental illness. The most damaging stigma I ever encountered was when my past doctor told me, “your bipolar will only get worse.” I was left without hope. I had no say in my care. She gave me no respect. I was treated like a disease, not a person. She said to me “you are bipolar roman numeral number one.” It is devastating to feel stigma from the person who is supposed to help you get better.
Thankfully I’m in recovery now. My current psychiatrist does not make me feel stigmatized. He respects me and lets me have a say in my care. Stigma harms me less, but I still must remain vigilant. My experience has shown me many forms of stigma and how to fight against it. Here are the two ways I believe are the most effective.
I’m in recovery now thanks to someone’s brave act of coming out. While in the hospital, I learned of a woman living with schizophrenia who shared her own message of recovery with the public. I was shocked. I never knew recovery was possible until I saw her. All along stigma told me this could never happen to me. In an instant, her message inspired me, it sparked my hope that had long been dormant. It motivated me to work as hard as I could to reach recovery.
Our self-esteem and self-efficacy haves been battered by stigma, but it can be restored by coming out. We should not be ashamed nor afraid. By coming out, we can connect with each other and people who don’t understandmental illness. We can show them that we are wonderful people, not much different from them. We can replace their discomfort, distrust and fear with empathy and compassion. We can replace myths and stereotypes with facts, let others know that mental illness can be treated and managed. It is the most effective anti-stigma approach.
We need campaigns that spread these peer examples. We can’t wait for recovery to come to us. Countless people living with mental illness can benefit from the relatable examples of others living with mental illness whether those peers are struggling or well.
Sadly, coming out is not an option for many, due topersonal circumstances and stigma’s many potential adverse consequences for basic human needs like well-paying jobs, safe housing and quality health care. Some may benefit greatly as I did, some may not. It’s a deeply personal and private matter. And once you’re out, you’re out. We must all think carefully about disclosing our diagnoses, and online resources can even help with the process. However, part of this decision is understanding the potential positive impact we can have.
The impact of peer examples on me was so profound that it inspired me to come out, even with one of the most stigmatized conditions – severe bipolar I disorder with psychosis. Sharing my experience furthered my recovery by increasing my sense of self-empowerment, self-esteem, self-worth and support from others. By inspiring and supporting others, coming out will also contribute to combating stigma in our society. My impact compounds as it influences others to share their stories, who then influence others, and so on.
The mental health community is a large community.However, very few of our leaders have a condition themselves. Many leaders of organizations representing people with mental illness have seen it firsthand through a friend or a relative who has mental illness. But knowing someone who has mental illness and having mental illness are not the same.
Only we know what it’s like to live with mental illness. We know our wants and needs best. Our mental health system would be much better if we were more involved. Butagain, stigma has prevented us from coming forward and representing ourselves. And staying out of the important conversations only perpetuates and intensifies certain stigmas about people with mental illness.
We need to speak more for ourselves. We need to assume our power and pursue our goals. We welcome and value the respectful guidance and counsel of our allies, but we need to increasingly lead the way in advocating for and supporting our community. We are at our most powerful when we’re standing together.
I wish many things for my community that I love very dearly. Sadly, our history is filled with cruel and dehumanizing treatment. Once we were cast off by society – discarded in asylums, locked up, isolated, immobilized, even lobotomized and sterilized. Now, many of our peers are in jails and prisons or living in extreme poverty on the streets. We must not let stigma silence the cries of our community to allow these wrongs to continue. We must advocate for each other.
I wish all people with mental illness, whether we’re struggling or well, will be accepted, respected and fairly treated. It’s time for individual and social change that recognizes our humanity. We are capable of recovery. We can and should have full and meaningful lives.
Katherine Ponte is a mental health advocate, writer and entrepreneur. She is the founder of ForLikeMinds, the first online peer-based support community dedicated to people living with or supporting someone with mental illness, and Bipolar Thriving, a recovery coaching service for caregivers and their loved ones affected by bipolar disorder. She is also the creator of the Psych Ward Greeting Cards program in which she personally shares her recovery experiences and distributes donated greeting cards to patients in psychiatric units. She is in recovery from severe bipolar I disorder with psychosis. She is also on the board of NAMI New York City.
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