When I disclose my diagnosis of schizophrenia to someone, they invariably ask me this question: “What’s it like?”
I consider suggesting mental health sites, the public library, or a local bookstore for that information, but experience has taught me that people aren’t as interested in learning about the symptoms of this debilitating illness, or the impact it has on a person’s life, as they are in hearing anecdotes that correspond to the social stereotype. That says more about media saturation than it does about the person asking the question. I believe that people are inherently good.
If someone has a genuine interest in knowing what it’s like to live with schizophrenia, I feel obligated to share my personal experience. The truth might make them uncomfortable, but the conversation has to start somewhere. Change cannot happen if we live in a bubble.
When I received my diagnosis, I dedicated myself to education and advocacy—the tools of survival. Surrender was my greatest asset. Not defeat, but willingness. It was time to seek out solutions to problems that I didn’t know I had.
Along with my diagnosis came the classification of being disabled. The processes involved in public assistance programs are nothing short of discouraging, but they have to be done to avoid being impoverished or worse. To be mentally ill and homeless is to live below the bottom of the food chain. Farther down than dog-eat-dog, it’s the pet cemetery. My short stay there still haunts me. The loss of self esteem as I stood in line at a church basement, waiting patiently for stale bread, random canned goods, and past-the-pull-date frozen foods, left me crying the whole afternoon. It was Thanksgiving.
Except for the morbid similarity to staring at a traffic accident, nobody’s curious about the humiliation of losing your job to a psychotic event. Yet nearly one in five U.S. adults live with a mental illness. Only one percent of the world’s population will be diagnosed with schizophrenia. That’s a lottery no one wants to win. Like the unfortunate jumble in the rearview mirror.
No one’s eager to know about a psychological evaluation, how it feels to answer questions designed to induce psychosis while a government psychologist documents the severity of your illness for legal purposes. Having that report read back to you is like drinking syrup of ipecac so the waiter who served your order can tell you what you ate.
How attractive is your disability income to the dating pool? Can you even consider dipping your toes in the water? Setting aside any apprehension, you ponder joining the psychiatric services clubhouse in the hope of meeting a fellow Misfit Toy, a person who won’t judge your worth by your pocketbook, let alone your diagnosis. It always works in the movies. There’s always a silver lining. And there’s always the question “What’s it like?” to which there is only one answer.
Not the cheerless corner of the uninvited or the desolate path of the broken heart, but an entirely different brand of loneliness, one defined by loss. Profound loss. A loss you can’t grieve because it has no end. This is schizophrenia. This is what it’s like.
Imagine that your family and your home were never real, that your memories were shadows in the dark. The moments that you cherished, only whispers on the moon; a lifetime of experience, vapor. Your best friend. Your first kiss. All of it—gone. More than gone, never was.
Imagine learning that your illness is responsible for depriving you of the life you thought you’d led. Try to understand the permanence of this condition while the culture ostracizes you, blaming you for this intimate devastation. Who can you trust? The professionals providing you with this unwanted piece of the puzzle? You are a traveller without a country. The tools of survival are moot. Surrender becomes your greatest liability when everything you know is wrong.
I share the contents of Pandora’s Box not as myth, but proof of life. As real as the elephant in the room, stigma discourages us from asking those questions which might afford insight into one another’s healing, providing answers and acceptance for future generations of people coming to terms with mental illness.
Treatment plans and mental health look different for every individual because each diagnosis is unique. If you are willing to ask the question “What’s it like?” don’t shy away from the answers you receive, or the responsibility you feel when they come. There is no loss in kindness, only gain. Imagine that.