First Hand Accounts of Schizophrenia

August 2, 2007 6:44 PM

Help me create an interesting and realistic character with schizophrenia for my novel. Ideally, there would be a "Vaults of Erowid" type site out there where people have documented their 1st hand experiences with mental illnesses, but no such site seems to exist.

I have researched the major sites on mental heath and schizophrenia (schizophrenia.com, mentalhealth.com, webmd.com, etc), I am currently reading Diagnosis Schizophrenia and The Dinosaur Man, and I am trying to obtain Operators & Other Things via an inter-library loan. But I want more. So where else should I be looking and what else should I be reading for personal accounts of schizophrenia? Thanks for your help!

posted by ekstasis23 to writing & language (26 comments total)

Mark Vonnegut's The Eden Express is a first-hand account of schizophrenia, and is also very readable and a good period piece.
posted by rachelpapers at 6:48 PM on August 2, 2007

Matt Ruff's references for his (excellent) novel Set This House in Order. It links to Astraea's Multiple Personality Resources and its book list.
posted by Zed_Lopez at 7:02 PM on August 2, 2007

I used these YouTube videos for a presentation I recently did on schizophrenia:

Schizophrenia, from a young woman diagnosed at college age
Animated Minds, which has an animation to match the hallucinations the narrator had

I also used Miller, Rachel, & Mason, Susan (2002). Diagnosis schizophrenia. New York: Columbia University Press, which has firsthand anecdotal accounts from a number of patients hospitalized for schizophrenia. It's designed to be a handbook for the recently diagnosed and their families, with info on what to expect. It may not be exactly what you're looking for, but it's quick, interesting reading.
posted by occhiblu at 7:02 PM on August 2, 2007

Duh. Should have finished reading your question! Sorry.
posted by occhiblu at 7:03 PM on August 2, 2007

(I seem to also remember a couple rather long videos on YouTube from a woman with schizophrenia talking about her experiences with it. You might just want to do a search there and see what turns up.)
posted by occhiblu at 7:07 PM on August 2, 2007

I remember reading about a simulation of a schizophrenic's world created in Second Life by some academic psychology lab. It appears to have gone public; you can Google for schizophrenia and Second Life or start here. I've never visited it myself so I don't know how useful it would be for you, but it sounds kinda interesting.
posted by Quietgal at 7:19 PM on August 2, 2007

You should certainly see Clean, Shaven.
posted by rhizome at 7:23 PM on August 2, 2007

The writer Evelyn Waugh experienced a spell of psychosis as the result of medication poisoning. He has used this experience in writing the novel The Ordeal of Gilbert Pinfold.
posted by jouke at 7:24 PM on August 2, 2007

Please be aware that schizophrenia and MPD are very very different disorders. I have a relative with troubling/problematic schizophrenia who I have mentioned here before, and a few friends who have it who have responded well to treatment.

Be aware that people with schizophrenia who respond well to treatment are a whole different thing than people who don't. I'd suggest checking out NAMI's (National Alliance for the Mentally Ill) Schizophrenia Communities. It seems to be more about family members and having discussions (I'm not a member, but I like NAMI and their approach to mentall illness generally) but there is a lot of first-hand information.

The best resources you are likely to find are from people who had a schizophrenic episode or period and then got their schizophrenia diagnosed and successfully treated. You may want to search for some of the medications that schizophrenics take to hear about people's experiences on them which will actually give you some solid information about the before/after course of the mental illness.

Because schizophrenia is such a dissociative disease that really alters one's perceptions of what around you is real, it's a little hard to tell while you're in it, that it is what's causing your problems. At least that's been my direct experience with schizophrenics. So, the way you could say "I'm depressed" or "I have a phobia" it's a little tougher to have that impression of yourself as someone having schizophrenia.
posted by jessamyn at 7:27 PM on August 2, 2007

Memoirs of My Nervous Illness is a very literate and yet totally deranged account by a German judge committed to a mental hospital for schizophrenia around 1900.
posted by magicbus at 7:31 PM on August 2, 2007 [1 favorite]

I would see if you could go sit in on some meetings at psy center and experience the condition first hand- perhaps, before it is diagnosed.

Plead your case, they might let you in. You might even be able to find some support centers where you could gain some more insight and do some interviews.
posted by bkeene12 at 7:41 PM on August 2, 2007

Certain psychedelic drugs (like LSD) may reproduce a schizophrenic-like state in some people. That'd be one way to get insight into it.
posted by mikeand1 at 7:50 PM on August 2, 2007

Ian Chovil has an extensive website about his experiences having schizophrenia, both untreated and now treated. I read a lot of it a year or so ago, and it was really interesting.
posted by dreamyshade at 8:11 PM on August 2, 2007

you'd have to pick through the fictional aspects, but a lot of phillip k dick's novels deal more or less directly with his experiences (and are very interestingly written).
posted by lgyre at 9:13 PM on August 2, 2007

Look for Roy Porter's - A Social History Of Madness (anything by him would be a good bet) in the book he gives historical first hand accounts of the mad. Another book is, A Mad People's History of Madness by Dale Peterson which includes essays mentioned by some of the other posters in this thread.

You might also want to rephrase your search terms and use phrases like "consumer" or "psychiatric survivor" if you haven't already. Folks who use those terms tend to be more vocal about their experiences.
posted by squeak at 9:47 PM on August 2, 2007

Two characteristics of schizophrenia that are hard to capture in novels, because they work against the process of storytelling, are the pervasive fear that accompanies the illness for many sufferers, and the isolation that being visibly disturbed generally creates. If you concentrate on capturing these elements, truthfully, but without the artistic flights of fancy that you find in screenplays, you'll go further than many in presenting the disease truthfully.

The term "paranoid schizophrenic" was used for much of the 20th century as a classification and diagnostic description. Many people suffering from schizophrenia find their hallucinations terrifying, unrelenting, and utterly exhausting. I know people who, unmedicated, feel that the very real Devil Himself, Incarnate is speaking directly to them, and ordering them to kill every third person in sight by impalement on water oak staffs they find and cut fresh themselves. They get no real sleep for days at a time. They expend tremendous energy trying to follow others speaking normally to them, through the tremendous din inside their own heads. They feel they are being constantly watched, because in many cases, they are, their behavior having drawn the regard of others about them who are trying to figure out what is wrong. Many suffers with religious preoccupations feel that unless they can follow intricate rituals prescribed by their voices, that harm will come to them or others, and the fault will be theirs, and they carry tremendous moral fear and guilt as a result. So, if you look in the unmedicated faces of people with severe schizophrenia, you often see, as much as anything, constant fear. But that is a simple truth, not so easily depicted.

Secondly, schizophrenia eventually robs many sufferers of most human connections. On the one hand, because of the paranoia that frequently accompanies the condition, it is sometimes hard for even family members to remain in contact with schizophrenia patients, especially in early phases of the illness, when a family may not understand the symptoms, and the patient may be still trying to cope through self-medication, religious observance, or other means. Later, many of the disease's "negative attributes" including alogia, affective flattening, and avolition combine with its "positive symptoms" such as disorientation, confusion and memory problems to make it difficult or impossible for many schizophrenics to hold a job, and pay bills with sufficient regularity to keep a home. The onset of the disease frequently occurs in the first major phases of adult life, before a person is well established, and so such people have fewer community connections and resources to begin with. So, many schizophrenics ultimately wind up on the street, struggling to survive in shelters and soup kitchens, and from one brush with law enforcement to the next. Many are first accurately diagnosed after being arrested for some bizarre or destructive public behavior.

The overwhelming issue for most people trying to cope with schizophrenia is that they are just average people, and the disease is not an average problem. People with schizophrenia are not generally Fisher Kings, or Brilliant Minds, and they don't become Joan of Arc by getting this disease. The voices in their heads don't sing in harmony, or make useful suggestions at key moments in life, and the medications we have to treat the disease don't work for everyone. Even those that are helped by medications, must often live with significant and debilitating side effects, and remain on medically supervised dispensing protocols for the remainder of their lives. About 40% of people with schizophrenia will make at least one attempt at suicide, and between 10 and 15% will eventually take their own lives.
posted by paulsc at 11:24 PM on August 2, 2007 [1 favorite]

Thank you all for taking the time to share your answers and experiences with me! Keep 'em coming!

mikeand1: I have definitely been down that path. :o) Some of my past experiences with LSD & Mushrooms (luckily only 2 bad trips, and many good ones) & experiences involving staying up for days on end due to reckless stimulant use have given me a glimpse into what it might be like to be in that sort of mental state.


lgyre: I am a huge Dick-Head, his works are a great source, thanks!


paulsc: That is exactly what I want to be able to portray; the terrifying, overwhelming side of schizophrenia. I want very much to avoid the book & movie clichés of (as you stated) the "Fisher King/Beautiful Mind" type of schizophrenia. I also want to avoid the general cliché of the shambling Vietnam vet who thinks the CIA put a chip in his head.

Not that there aren't people that are like this, but it seems like these are the only two portrayals of schizophrenia that get much use in novels and films.

I have two friends who work with the mentally ill, so I have had many discussions with them about various cases and patients they have seen, and I want to try to depict a more realistic version of schizophrenia.


Here's a list of online sites that I've collected, for anyone who is interested.
posted by ekstasis23 at 6:35 AM on August 3, 2007

Watch the film "Das weisse Rauschen". It's the most accurate depiction of schizophrenia on film i feel.
posted by dydecker at 10:29 AM on August 3, 2007

oh, forgot to mention: the director was a psychiatric doctor.
posted by dydecker at 10:42 AM on August 3, 2007

Also look into schizotypal personality disorder. Its a variation on schizophrenia that doesn't display positive symptoms (i.e., they don't hallucinate and all that good stuff), but they have the same severe defects in everyday life (their speech is off, they're antisocial, somewhat paranoid, isolated, etc). Way too much emphasis gets placed on the positive symptoms, because they're (sort of) required for a diagnosis, but the negative symptoms are there as well.

First episodes tend to be very late teens / early 20s, which is a rough time for this stuff to happen. There's a lot of research being done to screen for schizophrenia, because many patients go through an SPD-like stage before the positive symptoms come up. But if you can imagine just recently having established a sense of identity, and then being basically tossed around in the wind for the rest of your life, being put on pretty serious meds that make pretty serious changes to your brain, that's something like what its like.
posted by devilsbrigade at 11:04 AM on August 3, 2007

Also, if there's any sort of psychiatric hospital around (including a VA), you may be able to work your way into a SCID interview, which would let you watch a schizophrenic being rated.
posted by devilsbrigade at 11:06 AM on August 3, 2007

Certain psychedelic drugs (like LSD) may reproduce a schizophrenic-like state in some people. That'd be one way to get insight into it.

The term psychedelic was invented as an alternative to psychotomimetic because researchers realized that their initial assumption (that such drugs imitate psychotic states) was pretty far off the mark. Even LSD did replicate schizophrenia (which it most certainly does not), suggesting that someone give him/herself a bad trip on purpose is about the worst idea I've ever heard.

Amphetamine psychosis, on the other hand is almost clinically identical to schizophrenia. I wouldn't recommend instilling it in yourself, though.
posted by solipsophistocracy at 12:35 PM on August 3, 2007

even if LSD did replicate...
posted by solipsophistocracy at 12:36 PM on August 3, 2007

Yeah, I wouldn't recommend a bad LSD trip. Spending 6 hours hiding under a blanket because the bloody hand in the garbage disposal told me about knives and my sleeping friends while strobe lights from the downtown buildings across the highway pummeled me. And then the nukes dropped and the world was ending...not such a great time.

And that goes double for self-induced amphetamine psychosis...the men in yellow coats shuffled outside my apartment door for HOURS one night.

The good times were great, but the bad times were AWFUL.

But I do think that it did give me just a peek into the world that people who have these disorders live in 24/7. Hopefully that will help my writing. Thanks again to all who have contributed here!
posted by ekstasis23 at 1:31 PM on August 3, 2007

I'm schizotypal, devilsbrigade, but your explanation was about as good as any I could give. It's nice to see schizotypal personality disorder getting some exposure 'round here.

I could also relay some bad acid trips, but it's hard to put a torrent of pure, distilled essence of fear and foreboding, looming death into words.
posted by tehloki at 4:10 PM on August 3, 2007

Glad to hear it. I work in a schizophrenia/SPD lab, but we don't have much patient contact, so its nice to know we're not getting too far off.
posted by devilsbrigade at 6:19 PM on August 3, 2007