What Its Really Like To Be Schizophrenic

Schizophrenia Simulation
John P.

A few years ago NPR did a story called “The Sights and Sounds of Schizophrenia” which tells about a training program created by Janssen Pharmaceutica, a pharmaceutical company that specializes in treatment for Schizophrenia.

I watched the 5 minute video just one time 5 years ago and it literally changed me. It was such a powerful and moving experience that I cannot forget it and it altered my perception of mental illness forever.

I’ve tried to tell people about it over the years, but it’s just something you have to see, so finally I searched and searched until I found it again so I could put it on the blog.

The textbook description of schizophrenia is a listing of symptoms: delusions, hallucinations, disorganized speech and behavior. But what does schizophrenia really feel like? NPR’s Joanne Silberner reports on a virtual reality experience that simulates common symptoms of the mental illness.

Silberner, who experienced the simulation, says it works this way: “For five to 10 minutes, someone wanting to know what it feels like to have untreated schizophrenia puts on goggles and headphones, and sees and hears a range of hallucinations. You can choose your virtual reality — what happens on a trip to the doctor’s office, or on a ride on a city bus.” In the program she experienced, a caseworker takes the schizophrenia patient to a grocery store with a pharmacy in the back, to refill a prescription.

To create the virtual reality project, technical director Stephen Streibig consulted a group of people with schizophrenia, including Daniel Frey, 26. Frey describes what he and Silberner experienced in the program: “When you first walk into the pharmacy, you’re walking through the aisles and there are people staring at you, just staring at you from every aisle. And there’s one instance where there is a woman sort of protecting her children from you when you walk through the aisle.”

Even though schizophrenia patient Frey consulted on the project, he found the simulation too disturbing to sit all the way through. When Silberner tells him she was terrified by the experience, Frey responds, “Yeah, you ought to be! Imagine not being able to take off the goggles, the helmet.”

I also found this other video that is even better, in a creepy sort of way:

If you found this as informative as I did please help spread the word. I think the more people that see this, the greater the tolerance we’ll have for those less fortunate than ourselves.

Comments

  1. elise says

    I have an 18 year old son that began hallucinating several years ago. He saw these videos and said his is not like this. He talks excessively all day to them, and says he has experienced hell, been there and back. He says his voices can think. He says there are many people he can actually see that he believes are really there. This is his whole world now. I have someone who looks like my son, but somehow is very
    different. When things get too bad, loud, scary, he asks to be taken to the hospital where he feels a little more safe. This illness has been a nightmare for my son.

    • Wendy says

      This is very similar to my sons descriptions of how and what he feels. About every 4 to 6 weeks he admits himself into the ER. With very bad anxiety and suicidal thoughts. They put him on a 72 hour hold in a mental health clinic. This started when he was 21. He is now 24. He has made 4 attempts of killing himself. First 3 times cutting his wrists with razor blade. Deep but not hitting an artery . The last time he hit an artery, barely survived. He’s promised me every time he won’t do it again. Every morning I’m in fear to go to his bedroom. I don’t breathe easy, or easier, until I hear him make a noise from his room, and I know he’s still alive. I feel guilty even thinking my life is Hell , because I know he’s living the Hell. I’m very thankful for the fact that he has agreed to take medications for his condition. The last six months. He is alittle better since taking them. He doesnt think anythings wrong with him. Hes the only one that hears the voices, talks to the voices, sees things. The other people might have schizophrenia but he doesnt, and wishes his family would believe him. The last 6 months.

  2. Darrin says

    Hi have schizophrenia also. I have had it for the last 2 years. Most of my schizophrenia is auditory where I hear voices that are kind of distant. Sometimes I cant make out what they are saying but most of the time the voices are negative. The voices really messed my mind up and have put me in a bad depression. Its kind of like being in a bad a relationship where you are always being mentally beat up. Its difficult to deal with and I don’t know how I have made it this far in the last 2 years. I feel like everyone hates me (which they do) because they listen to the voices who are always putting me down. I have lost so much of myself since this illness has come into my life. I don’t know who I am anymore. When I look into my eyes all I see is pain. Its a lonely life when your living with schizophrenia. Well besides the voices following you where ever you go its a pretty lonely life.

    • Garrett says

      I also hear distant voices but they don’t follow me anywhere. It seems to be right outside my widow and In my adjacent bathroom. They sound different from room to room and change accordingly to space. I am starting to think that maybe I am hearing something that is real , and that someone is being tortured sexually by a maniac or maniacs. I can just hear her screaming and begging to please stop, but they just keep on going and it just breaks my heart. I feel like I got involved with a kidnapper or someone’s like that. Now I’m being tougher a lesson cause it sounds like they have my girlfriend. I seem to notice that cars tend to follow me and I’m am now fearful of my life.

  3. Don Fraser says

    I have a 36 year history with schizophrenia. I am in remission now and I’d like to stress one important point from the videos/comments. You can recover from this illness. There are a good 50% of people who do respond to treatment. Most of the treatment programs are based on the recovery model. With all the new drugs available now and psycho-therapy as an important part, many of us recover and go on to lead healthy, normal lives. Yes,it’s a nightmare, but there is hope.

  4. Kateridawn says

    My husband had schizophrenia for 7 of the 8 years we were married. Unfortunately he committed suicide last October as a result. These videos scared the hell out of me and I had the choice to turn them off. I cannot imagine what he was going through. He told me that he heard family members commenting on his actions and thoughts. He believed that they implanted something into his head that allowed them to see what he saw and to read his thoughts. At times he would accuse me of being on their side as well. He used to listen to music really loud all of the time. I think that he was trying to drown out the commentary in his head. When I met him, he was always the life of the party and was so fun and outgoing. After he got schizophrenia, he stayed secluded in the room. On the rare occasion that he would go out of the house, he would sometimes have these outbursts of rage. He felt like there were so many people involved in the conspiracy. I tried to help him and I always stood by him whenever he would let me. I miss him very much but I also miss the man that he was before he got sick. I am so sorry that you have to go through this and I hope that you find strength in all of this.

    • LG says

      I am sorry for your loss, i can imagine how your life and your husbands life must have been. My brother is recently diagnosed with Schizophrenia as well, and he used to imagine the same thing as your husband did, luckily for us, the hospital people came to our rescue and took him involuntarily.

  5. theresa says

    How can a person help to make a loved one aware that she may have schizophrenia. My heart is breaking every day that goes by without a diagnosis,without a treatment plan and every call i make to behavioral health describing behaviors that only results in some one saying”well sleeping out side in the rain is not enough for an involuntary commitment” I feel like I’m loosing my baby. She will be sad then laughs at sad stuff, she holds her hands over her ears and cries, she was a total recluse for about2 and half years but now she is coming out more which I thought was great but now she has all kinds of odd behaviors. I keep asking for help and I can’t seem to get anywhere because she’s now an adult. Please help me to help this incredibly artistic and warm hearted beautiful little girl. 2092061076 please help

  6. Yadis says

    I have schizophrenia and mine feels like both videos … I could honestly just watch the first 3 minutes. For those who want to know what schizophrenia is really like its very close to the videos… Except mine, I get geared up whenever I hear cars driving slow, feel if I am cooking and someone touches my food, I feel like they are trying to poison me. When I go to sleep I hear whispers in my ear. And don’t let me tell you how bad the stuff gets of my meds: I’ve seen gremlin/demon looking things, one whom transformed from my sleeping daughter, loud bangs like a pistol when I go to sleep. I can’t look at mirrors because they scare me most times, I feel like cars are following me, feel like when people are at ear distance are talking about me. Don’t let me forget the shadow people and the smells along with the bright lights that hurt my eyes. It’s a hard disorder. When I was rock bottom, I had like 4-5 voices telling me to kill myself because I was worthless and a sad excuse for a human being. I attempted suicide 2 times. The voices are mostly in my head, I know how to tell the difference, however when I miss some doses they become auditory in my external perception. It’s a pretty messed up mental illness to have.

    • Tim Weiss says

      I wish you well, Yadis! I know you are a wonderful human being full of love and life!

      I’m not entirely familiar with the condition the videos depict and what you describe as your experience, but I am interested to learn and engage! I am amazed that with all of these voices you hear inside your head that you are still able to find your voice and type it out for yourself, as you wanted it. Perhaps it took you a while to type it all out, perhaps not. In order to write out what you did, you had to ignore some of the voices, right? Are you able to talk back to these voices, even debate these voices, in your head? If you tried to take one on at a time and dialogue, or politely asked them to stop, does that do anything? I think you are more normal than you may think, or I am more abnormal than I think :). I don’t aim to confuse you or make things worse, which I hope I don’t do!

      Would it make absolutely no sense if I suggested the voices you hear are just a product of what you hear with your sense of hearing? If you wore noise cancelling headphones, would the voices stop? Does music help with your state of mind?

      Forgive me for all of the intrusive questions. You don’t know me, so feel free not to answer. I only seek to understand myself better through you, because in some ways I relate to your experience.

      With all of the kindness of my heart, I wish you well, Yadis! I understand you are a wonderful human being full of love and life!

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