What Its Really Like To Be Schizophrenic

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.

Article Written by
John P.

John P. is CEO of Livid Lobster and co-host of Geek Beat TV. You can also find him on Twitter, Facebook and Google+.

Comments

  1. anonymous says:

    @ the person that apparently believes in telepathy

    I might give a single iota of my attention to your belief if you had so much as the tiniest amount of proof for it.

    Saying that disbelief in telepathy is a shrouded view of reality is to be in denial to the fact that there are laws that the universe abides by. To ignore those is to live in a dream world of reality.
    If there aren’t rules dictating our actions in this world then what’s stopping us from flying if we believed we could enough? And don’t tell me that that’s possible. Do you see people flying about this way and that? No you don’t no matter how much you wish you did, stop doing drugs and get real.

    And, rules to reality being applied, how do you profess that this telepathy works?
    Extra-dimensional radio waves?
    You don’t think that every kind of electromagnetic wave the brain gives off has already been detected?
    Christ, for a neurologist that’s lamens stuff.

    And you obviously don’t even know what you’re talking about in the first place with whatever “facts” you try to use to your advantage.
    We don’t ONLY use 10% of our brain capacity.
    The actual supposed fact is that we only use 10% of our total brain capacity AT ANY ONE TIME. It all gets used at some point.

    In future don’t perpetuate every little thing you hear before checking it out and learning about it yourself please.

    And before you get started, no faeries don’t exist either.

  2. Wayne says:

    Yea, I buy that there’s telepathy involved in schizophrenia. it hurts like hell. It’s a small plus amongst the minusses.

  3. anonymous says:

    First of all, to say telepathy doesn’t exist is to limit your scope of reality. And the reality of it is that telepathy is a naturally occuring phenomenon. When schizophrenia was first being studied, one of the many symptoms was experiencing forms of telepathy. (Look up “telepathy and schizophrenia”) Much is not understood about the disease, but further alienating schizophrenic patients by telling them their experiences of telepathy are not real only proves that certain people are incapable of understanding the true experience that is schizophrenia. Honestly, don’t you find it quite convenient that we only use 10% of our brain? Exactly what else is there to discover about the human brain? Have you ever heard of making the unconcious consciouss?

  4. Evelyn says:

    My brother also has been diagnosed with this label of a disease for the last 30 years. I have witnessed much of his life because I live close to him. The way his life has affected my mother especially, is challenging for us, On the light side, even after witnessing the sometimes frustration that comes with this experience for the affected person; I have also seen my brother make a tremendous accomplishment of living his life more peaceful and with more awareness of what is happening to him without taking the meds that are sometimes being forced on these people. I tend to think there are natural and spiritual alternatives to respond to this challenging disease that affects us all, whether they are our relatives or not.

  5. Judith says:

    My son was diagnosed a havng ADHD at 33 they then gave him dexaphetmine he took these for 3 1/2 years before I knew that, he was living with a wife abused hm over 5 yearswho virtually wore him down her words were to him I will make you suffer and top you seeing your daughter (I mention here that he did not deserve or cause any trouble to be told by her sister and husband to get him) out the house) her nastines continues to this day and a settlement she is not happy wityh a she want the lot.
    My son finished up in a mental lock down ward mid last year. I travelled 10,000ks to go and pick him up by car. I told the psychiatrist that I want him off that medication and told them he has never had ADHD being a nurse and a degree in disablilities I certanly would have been the first to notice that something was wrong. The psychiatrist that came in by plane once a week was so rude to me and she ddi not take the time to ask questions and history and he was also telling him to take the dexap;that it was good for him! these tablets are cocaine the doctors in W.A. give these tablet out to people and children as if they were sweets, the docotr also told my son to take the tests when we arrived at my home “to please your mother” at this time he was completely had the symptons thanks to the dexa; and mental abuse from the wife. I brought him home and he saw my doctor who repeated to my son that they had mis-diagnosed him and gave him medication that he (doctor) and states in australia (except W.A.) will not prescibe them because of the danger and effects. My son had been taken many tmes to the hospital and told to go home he was fine. My doctor here diagnosed him as having Schizophrenia and after many tablets got him on the right ones.He stayed with me for 3 months and then returned to his job (I thought he was going back too early) I have now found out he stopped his meds and is now detained in the lock up ward again.I phave pleaed with the staff to please have the psychiatrist phone the doctor here my on ha not had any medication for 6 days. I told them what and how much he had been taking they choose to ignore me and I have been told they said he fell of his horse. Absolute rubbish I have 3 people ring me as they were worried about him he was acting strange. I rang the hospital and was told by the staff he does not have schizophrenia he is too young?? I beg to differ and my doctor is an excellent one. For soem unknown reason the medical staff in W.A.are not interested in asking questions to a parent or wanting to know his history in the 3 months he was living with me.
    Everything written about people suffering with this disorder I cannot see an age that you may be afflicted with Schizophrenia?
    I have a lot more to say about some doctors, their ignorance and dexaphetmine happy. I have wrtten to the doctors, hospital and the medical boards telling them how my son was treated and guess what I did not have one answer from them, doesn’t that tell me something? Keeping him on this meds for 3 1/2 years he is not the son knew for a mother to see her son who was happy, drug free never sick,and a social person compared to what hear and see now is devastating.what can I do to help with the staff who have him at the moment and he has now not had any meds for 6 days??

  6. Camille says:

    My mother has Schizophrenia, and it is awful. It didnt really bother me as a child, I didnt understand it. But it is a terrible disorder. When she doesnt take her meds, she thinks everyone is out to get her, or hurt her. She goes through fases…all we know is a new person comes out. She can get very nasty and angry with us. There was one time where she didnt eat anything for close to two months. She said there were andacondas and we were trying to poisson her. Everything is poison, food, medicine. Its hard to help her at that point. Its been hell, let me tell u. There giving her a once a month shot now, so she doesnt have to worrie about the pills. Bless the lord!

  7. Kathy says:

    I’ve had much milder experiences like this when under stress for years now. The one thing that strikes me is how mean the voices are in the video; my voices start out just talking about me and pick up steam until they are making cruel remarks about my every thought.
    I think it’s also important to mention that there are some of us who function very well despite hearing voices. I am in professional school and doing well; I just know how to titrate my stress and take meds when I need to.

  8. Wayne says:

    I’ve suffered from a lighter form since I was 20. Thank God mine does not include voices, but I know exactly what is meant by going somewhere and feeling that people are staring at you and even protecting their children from you. The voices are you talking to yourself really. At some point you panic and then try to squelch hysteria and, believe it or not, you turn up the volume on your own inner talk and babble and once you do it it scares you so badly you cower and wont turn it off. Your fear immobilizes you and the talk won’t go away. I’ve tried to tell my friends, and they think it’s just self-indulgence and weakness to be mentally disturbed, but some of the most terrifying Things that can happen to a human being happen totally inside your own head. And they’re just as damaging as anything that can happen outside your head to your body.

  9. chris says:

    you found it to be like your daily life? really? I’m afraid I dont believe you. Do they talk to you? do they keep talking, never shutting up, always telling you how stupid you are? how worthless? how you should just go an die, its all your fault, waste of space, no-one needs you?

    • Karl Tancorra says:

      had some like that, and then They turned themselves into my family and friends and everyone I see, so ya theres a lot of different symptoms. wow I wish I had yours, they just skipped to Kill yourself. Id rather have that then trust issues.

  10. ~ please keep me anonymous ~ says:

    Ummm. Not only did I not find this tape “disturbing,” I found it pretty much like my daily life.

    YES, technically, I’m “mentally ill”: I’ve been diagnosed since childhood with GAD (Generalized Anxiety Disorder) plus periodic slides into balls-to-the-wall Panic Disorder…and yet given MINIMAL therapy/medication I’ve managed to sustain a marriage, parenthood, and a six-figure career; founded and for more than a decade administered a virtual support group for folks with similar afflictions; and recently launched what is so far a reasonably successful ‘second career’ as a nonfiction author.

    If this is “mental illness,” why on Earth are we so stigmatized?!

  11. Permy says:

    On the surface I must say the audio quality was nigh unbearable, and only in localized cases do schizophrenic patients find sounds physically painful to listen to.

    The visuals were kind of interesting though, the bus ride movie however was far better I feel.

    Though, taking in to account that I can speak from a lot of experience, in both myself and my mother suffering from the illness, that these are rather poor representations of the illness.
    But I am by no means bashing them. For one, the intention was only to present a taste of the illness and it is certainly absolutely great to find that somebody has attempted at creating such a thing. Which is a wonderful thing to see and I commend their efforts.

    I merely feel it should be pointed out that the people who view this should take in to account how their other senses are included too, unfortunately the media used to portray these experiences are lacking compared to the sensory complexities of a human and people should consider how a sufferer might often smell rotting things or feel people touch them that really aren’t.
    And also, suffering from ths illness cannot really even be defined in this manner. It’s like taking a recreational drug, you can only truly understand the experience via doing it yourself and not merely by word of mouth.
    People afflicted with this unfortunate disease don’t merely see black things flying around as depicted in this slideshow, the senses tell the sufferer the truth of what they feel but the mind can’t fully grasp it so the sufferer gets a sort of “overlayed image” of something exceptionally strange without the rational thought to be able to focus on the reality.

    Also another aspect of schizophrenia which makes it all the more insufferable which I think should be pointed out, is the way it destroys people and families.
    Quite commonly the illness fully develops in later life, when a sufferer has already gained friends, a partner and potentially a family.
    Take my mother for instance, she had a great life with a wonderful talent in the arts, a loving husband and three happy, young children. Then as her condition worsened it took all that away from her, now me and my sisters rarely see her as she has to live away in a home and the whole family has various broken mental mechanisms that just can’t resolve.
    I myself only suffer from it extremely lightly, if notable at all, and it has developed early so it appears with a bit of luck that I might be ok, my sisters are totally free of it, so really the saddest tale is that of my mother.
    It’s all well and good that me, my sisters and my father are able to forgive and forget the loss we experienced many years ago and we can go on to form other positive relationships with people but my mum has to suffer with it for the rest of her life and is always gonna find it extremely difficult to find the social and loving relationships that a person requires.

    And it’s the same all over the world, one of my friends suffered exactly the same with his mother being schizophrenic I recently found out.
    And hundreds of thousands more have broken families and sad relationships because of it.
    An interesting statisitc I have been given before are that the general populace are 1% likely to have some kind of schizophrenic illness.
    Consider that on a global scale and you’ll see how devastating it is.
    Then consider all other psychotic mental illnesses there are and how many more that they affect.

    Don’t even get me started on how the damned psychologists and doctors of the world try and help those with the illness.

  12. Brandon says:

    Nice one, anyone know of others ?

  13. Todd says:

    This one is nothing compared to the new simulation out by janssen:

    http://www.janssen.com/janssen/mindstorm_video.html

  14. iPC says:

    At a very young age, I was adopted into a family that suffered much schizophrenia and bipolar. Bizzare and sometimes frightening behavior was a multi-weekly experience. But I cared about those afflicted and that made their woes less alarming. Hence, when my last favorite lady suffered an anti-depressant induced psychosis for several months before many-many doctors figured out their misprescribing was the cause, I was capable of caring for her when no others would or could.

    That being said, our healthcare system is a mess. Most doctors don’t even discuss a common patient and when such information is shared, they become defensive. One endocrinologist actually convinced my gal-friend that she wasn’t bipolar and it was just thyroid trouble. Uh-huh, and off into mania-land she went again. The last episode was brought on by her (considered good) p-doc prescribing enough Ritalin to keep awake a narcaleptic. Two psychologists said she never should have been prescribed stimulants. About a week later, that p-doc vanished.

    Before it was over, she nearly lost her home and business, convinced others of her delusions and I had to defend myself in court. If a loved one suffers from mental illnes, don’t let the healthcare system ‘cost-shift’ you and yours around. Insist on proper care, education, assistance, and if that doesn’t work, write local judges, your congressman, etc. Most that suffer these illnesses are wonderful and loving people that cycle through problem times. And it’s not their fault.

  15. Man this is crazy even simply hearing this. I cannot believe what those people are going through. How can they live with all those voices in their heads. God bless them for their patience.
    I pray for their health!

  16. John P. says:

    Egor,

    I moved your comment over to my post about Schizophrenia. I’m guessing that you must have seen this article to arrive at the conclusion that I myself am afflicted by this disease. However, I am not schizophrenic nor do I hear voices.

    I understand that you have given the concept of Freemason mind control a great deal of thought and that from your perspective it makes sense. I however do not believe you are correct because your underlying premise is that “magic” such as telepathy actually exists. This concept is as fallacious as the Easter Bunny or leprechauns.

    Now, I don’t know you – you approached me via my blog – and I don’t care if I influence you or not, so hopefully you will be able to recognize my comments as neutral. But my opinion is that you need to begin taking your meds again. Did you notice that people didn’t start following you and “casting spells” until you were off the medication?

    I’m sorry there is nothing else I can offer to assist you. Please take your medication.

    John

  17. Egor Sanin says:

    Hello,

    I realize that this has nothing to do with the topic of your post, but I’m assuming that you are schizophrenic. Unfourtunatly, I feel obliged to inform you that more likely than not the symtoms of your “illness” have been manufactured by an outside force. Whether you choose to believe it or not, there exists a global conspiracy on scale almost too large to fathom. The perpertrators of this conspiracy are occultists – they practice the black arts. Now your first instincts may be to dismiss this as complete nonsense, but ask yourself this; if a group of individuals were practicing black magic that inflicted great harm on a great many people, would it not be in their best interests to deceive people into believing that such powers did not exist and were entirely fictional? And if it just so happened that these individuals had complete control over the media, government, and religious institutions, would they not do just that?

    The reality of the situation is that more often than not, psychiatric patients have been attacked by “magic spells” (for lack of a better description) cast by warlocks/witches/wizards/etc. that has compromised their psychological integrity. Usually, this nefarious individual is a freemason.

    I myself am Bipolar, and in the past I too would have dismissed such claims as ridiculous and that anyone making such claims was in need of some seroquel. But one day, I decided that enough was enough and that I was tired of being bilked by pharmaceutical companies for a product that was making me physically ill from a host of nasty side effects. It made sense to at least take a shot and live without any medication. I mean, I could always go back on if it didn’t work out, right?

    So I began the process of weaning myself of my meds, and things proceeded quite smoothly. That is, until I started to see people I recognized from around campus repeatedly, over and over, like they were following me around. Well, I won’t go into the details of my whole experience, but it ended up with a masonic recruiter inviting me into his home asking me if I wanted to be a freemason. This guy made no bones about his group’s interest in the occult and their agenda. I respectfully declined, since I had no desire to be party to the abuse and manipulation of my fellow man.

    These people have great power, not only because they control all of our major institutions, but because they have mastery over the spiritual energy that is present in all of us. While this proposition will sound completley insane to you, they do have the ability to control someone’s mind, to communicate telepathically, to manipulate your endochrine system, among other things. For instance, the voices that so many schizophrenics claim to suffer from are almost certainly the result of a warlock/witch/wizard either actually communicating with them telepathically or manipulating the auditory centres of said person’s brain.

    You might be suprised, but a A LOT of people hear voices, people you would never suspect. A wall street banker or university professor might hear voices all the time, only they are aware that these voices are actually those of another person who is intentionally communicating with them, so they don’t start freaking out. This is because they are affiliated with the freemasons, and have been properly initiated and trained to use telepathy.

    • NoriMori says:

      I really hope you’re trolling. Because otherwise the irony of your post would break my brain.

    • gmo says:

      pretty sure, egor, that u r not JUST suffering being bipolar…

  18. Terry says:

    Look at this man’s art work as decends further into his mental illness…

    http://www.boingboing.net/2006/02/22/schizophrenia_aging_.html

  19. John P. says:

    Sarah,

    I’m sorry you’re having trouble. Unfortunately this is the only site on the Internet at the moment with this content. :-(

    I forgot to mention that you need the Adobe Flash player to view the video, so can you try installing that and then see if you can view it?

    Finally, if all else fails, you can go over to the Revver site where I uploaded it and they allow you to download a Quicktime version of the movie. But that is going to mean you’ll have to install Apple Quicktime, which is far more of a hassle than the Adobe Flash.

    Let me know if you run into issues…

    John

    • NoriMori says:

      I can’t view the video either, and I already have Adobe Flash Player. And your link to Revver doesn’t work.

  20. Sarah says:

    I am not able to view the video – is there another site I can view it at?

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