Why People With Psychosis Need More Than the #EndTheStigma Movement

I write a lot about psychosis. I write a lot about schizophrenia and schizoaffective disorder in particular because as someone with schizoaffective disorder, I have dealt with discrimination firsthand. I prefer to call it what it is. I’m fine with people wanting to “#endthestigma” because that’s certainly better than no advocacy at all. But let’s call it what it is: discrimination, not stigma.

It wasn’t stigma that encouraged an admissions counselor to suggest I was unsafe on campus simply because I had been diagnosed with schizophrenia. To discourage me to return to school because of the idea people with schizophrenia are inherently dangerous wasn’t stigma, it was discrimination. To discourage people with schizophrenia from continuing to achieve their goals is discrimination. It’s discrimination and unfair treatment when you’re told your life is over after you’ve been diagnosed.

When a third of all people shot and killed by police have a disability, many of whom have a serious brain illness like schizophrenia, do you think it’s stigma I fear? What I fear is being shot and killed by a police officer who isn’t trained in handling a mental health crisis. But I don’t believe police officers use deadly force because of stigma; being shot and killed by police is discrimination. When the president of the country I live in, like so many people before him, uses psychosis as a scapegoat for mass shootings and violence, that’s discrimination.

The fear at the back of my throat when I tell someone for the first time that I have schizophrenia and bipolar disorder isn’t because I’m afraid of stigma, because stigma can often be worked through by proper education and conversation. I’m afraid that that person won’t ever talk to me again, or that they’ll become afraid of me. That they’ll act discriminatorily. While correct education about schizophrenia is important, it’s going to take more than that: a lot more. How can I educate people when some don’t even want to have a conversation with someone who has schizophrenia because they’re scared?

When I choose to be open about schizophrenia, psychosis or schizoaffective disorder, it’s because 11 percent of all people who are homeless have schizophrenia and most likely you aren’t going out to talk to them. I do it because we don’t talk about the fact that people schizophrenia die an average of 14 years earlier than the rest of the population. Because there are more people in jail (24 percent jail inmates and 15 percent of state prisoners) receiving treatment than there are in hospitals. Because too often, schizophrenia becomes a disease people have to fight alone. But what we really, really need is support and love. Because people don’t understand schizophrenia and don’t know how to support someone with the disease. I do it because people forget that people with schizophrenia are people, not just schizophrenics.

The “stigma” surrounding schizophrenia is far-reaching. It’s not just people wondering why you act “weird” sometimes, or why you’re so tired. It’s people getting shot and killed by police, people homeless and untreated, people in jail who could’ve avoided incarceration by proper treatment in the first place. It’s people being afraid to be around you, people thinking you’re a violent criminal, when you’re actually just a person.

You’re just a person who happens to have schizophrenia.

You’re a person. You are. No matter how awful people make you feel for having a disease far beyond your control. And your life isn’t over if you don’t want it to be. Just like any life-changing illness, you’ll have to adapt, but that’s historically what humans have been best at. 1.1 percent of the world’s population has schizophrenia (21 million people worldwide). Just remember you aren’t alone, and things are starting to change. There’s more research now than ever into better treatment, better preventive care and understanding how to create better support networks. If you look in the right places and seek out understanding clinicians, instead of being discouraged from pursuing your goals, you’ll find that you’re encouraged and supported to continue, to fight.

With this growing movement surrounding mental health advocacy, there are more people open about having schizophrenia than there has ever been. And we’re all working together to empower each other. Stay strong, keep fighting, don’t give up.

Follow this journey on Acceptance & Antipsychotics.