My First SchizoFRIENDia Changed Everything

It took me 2 years after coming to terms with my schizophrenia to find Shannon, my first friend who shared the condition. But when I finally met them, I knew they were worth the wait. We were both working at a mental health agency when I discovered they, too, had schizophrenia. I knew I had to befriend them as soon as possible.

Finding a friend with schizophrenia

The moment that solidified our friendship took place in a park on a sunny afternoon. I mentioned I wanted to commemorate my onset with a tattoo. To my surprise and delight, they replied, "No way, me too!"

Whereas I wanted to tattoo the start and end dates of my first psychotic episode on my finger, Shannon planned to tattoo their first visual hallucination – a flying grape – on their forearm.

This is what I love about my friendship with Shannon. I don't have to explain myself, because they just get me.

When others just don't get it

Sadly, living with schizophrenia means often having to explain yourself to others. It's an experience unlike anything else, which makes it impossible to fully understand unless you've been through it yourself.

For 2 years after I came to terms with my diagnosis, I tried to explain my experiences to those around me. I wanted them to know that some of my delusions and hallucinations were whimsical and beautiful. I wanted them to understand that it was the stigma, not the schizophrenia itself, that most traumatized me. I wanted them to realize that my schizophrenia was a part of me I was sick of hiding.

These messages proved difficult to communicate. Despite my best efforts to explain my psychosis as one of my most formative experiences, my psychiatrist still referred to it as "lost time."

So much stigma around schizophrenia

When I first floated an idea for an article I eventually published on Slate called "I Have Schizophrenia. Where's My Pride Movement?" my friends told me it didn't make sense for people with schizophrenia to be proud of their condition.

Though I told my therapist I wanted to work on accepting, not hiding, my new label, he said, "I don't think of you as schizophrenic" and told me I had "inappropriate boundaries" for disclosing my diagnosis.

Understanding the schizophrenia experience

By the time I met Shannon, I felt like the only person on earth who viewed schizophrenia in the unconventional way I did. It didn't help that unlike other marginalized populations, people with schizophrenia don't really have an organized community to welcome those newly diagnosed with open arms. Until I found Shannon, I led a lonely existence.

But when I finally found them – and realized my new friend felt quite similarly about much of the schizophrenic experience – it changed everything.

Of course, not everyone with schizophrenia agrees on everything related to their condition, or even whether it should be called a condition, disability, or gift in the first place. In fact, Shannon and I disagree on plenty.

Making a schizoFRIENDia

I'm sure some people living with this condition would never want to commemorate their schizophrenia with a tattoo. But I'm also sure most people with schizophrenia are frustrated with the dominant narratives our culture imposes on people like us.

That's why finding a schizoFRIENDia is so important. If you've ever had a thought about your schizophrenia that goes against the mainstream – anything as basic as "maybe my schizophrenia doesn't make me a monster after all" to as radical as "there should be a schizophrenia pride movement" – you likely know the pain of feeling like you're the only one who feels that way. Connecting with a schizoFRIENDia you click with is tremendously validating and empowering.

We're there for each other

Shannon is my go-to friend for when I need to workshop a new idea for my advocacy work or vent about the trauma of ableism. They are my only friend who understands my references to the "greats" like Eleanor Longden and Elyn Saks.

I've cheered them on through their acceptance into their PhD program, their engagement to the love of their life, and yes, through their tattoo of the flying grape that first appeared to them at the start of their experiences. And they have done the same for me as I navigate the ups and downs of life with schizophrenia.

My friend's hallucination-inspired tattoo

Finding belonging with schizophrenia

Because of my friendship with Shannon, I am a stronger, healthier, happier person than I ever could have been without them. So go forth and find your own schizoFRIENDia – through a support group, mental health nonprofit organization, or online community just like this one. Even if it takes you years like it did for me, I promise it's worth it.