The Experience of Schizophrenia

Recovery and Quality of Life
The atypical antipsychotics have caused a revolution in the philosophies driving support and rehabilitation although I haven't really been following this development in the journals. I tend to listen to presentations on treatment, and particularly early intervention which are quite different. Recovery is a very appealing philosophy at the moment in mental health. As I understand it there are at least two Recovery models. The radical model ignores biology and focuses on the sociology of the severe emotional distress that causes isolation from the community. This school is an offshoot of a long standing antipsychiatry survivor movement that focuses on the labeling of people with mental illness. The theory is that the actual illness or severe emotional distress isn't as disabling as labelling the individual mentally ill. The labelling results in exclusion from the community and the individual never recovers. Hospitalization in this model is a type of involuntary imprisonment, and medication itself is only of temporary benefit. The root issue is the exclusion from the community. Even this radical model has a certain heuristic appeal. That is, you know it's not accurate but it is still very useful in explaining reality. People are not biologists, and they don't see the world the way a psychiatrist would. They do understand exclusion from the community and they do experience the stigmatization of labelling. This model also explains why illnesses like schizophrenia are less disabling in less developed countries of the world, where there is generally less exclusion from the community. What it fails to recognize is how competitive modern society is fundamentally. When I was homeless no one ever gave me any money or food. I couldn't beg, but begging is not a viable means for paying the rent in North America. Every winter homeless people freeze to death in Canadian cities. Every day women are not safe walking on the streets after dark. In North America women have to be competent to avoid being raped. We don't talk about it very much but every woman knows better than to go for a walk in the park after dark. I was watching a Lonely Planet travel show about Japan and was surprised to learn that's not true in Japan for some reason. The streets are completely safe in Japan, and if you forgot your purse at a restaurant you can come back several hours later and it would still be there. That is generally not true in North America though. People take advantage of you in a competitve society. They are driven by their competitive struggle to pay the mortgage and raise their family.
This radical model of recovery focuses on what they feel people struggling with mental illness need most, hope. People who have been excluded from the community by their lack of competitive competence are facing a very steep climb back, and without hope for their future they lose their motivation. This recovery model focusses on the supports an individual needs to recover their roles in society, and never looks very far at underlying biology. They claim there are several long term studies that support their recovery theory, but I noticed a flaw in that argument. There is a high rate of recovery from schizophrenia in historical long term studies, but thirty or forty years ago, a diagnosis of schizophrenia was much less accurate, and more of a catchall for anything that couldn't be easily diagnosed. All said and done though I like the humanistic angle this radical recovery school takes. I think of myself as a biologist because that is what I trained in at univeristy, and I know how hard it is for a human to be a biologist. The term Grateful Dead comes to mind. A lot of principles of recovery people like Dr. Daniel Fisher write about are very appealing. His attitude is one of, Forget the biology, The patient needs to be in the drivers seat, and how can we facilitate that. There's a lot of common sense in that.
Another emerging school of recovery is more traditional, gathering momentum through enlightened service providers. It redefines recovery to accomodate disability. The biology or disability we're talking about is the disease of schizophrenia and it's not written in stone. At the moment schizophrenia is a unique individual experience, but many endure permanent partial disability, compromised competence, and vulnerability for psychotic relapses. In the future these biological processes may be prevented or reversed, but at the moment, individuals have to live with a compromised biology that leads to their isolation in society. My friends often comment that even though my accomplishments pale in comparison to ordinary peoples' accomplishments, they are especially significent because I do have schizophrenia. My accomplishments are a lot harder for me, than they would be for an ordinary person.
Recovery becomes a way the client can regain control of their life. The client knows when he/she has recovered. It's seen as the client speaking out about how he/she wants services to operate and consequently it's seen as the model for delivering services. Recovery is a logical extension of empowerment which was actively encouraged in the 90s. To me it's a feeling of managing my own life, of being a part of the human race, and it's a feeling of being proud of my individuality. For many years I was very ashamed of how unsuccessful I was in life. I was kicked out of graduate school, I was homeless for six months and twenty years of my life was completely wasted in an extremely unpleasant, untreated psychosis. I realized I would be on antipsychotics and antidepressants for the rest of my life. I could live with that. To be a failure for the rest of my life was very depressing to consider. I wanted to enjoy life like anybody else.
Treatment for schizophrenia didn't really improve my self esteem very much. I was completely unemployed and unable to attend school. Normal people were almost a different species, women completely unapproachable, and "I felt as high as a snake in a wagon rut". That's a quote actually, although I forget who from. There has been improvement in my quality of life each year on medication. My father has helped me out financially more than I ever would have expected. As I recovered on medication I realized that a lot of my life experience was not my responsibility. I was being ashamed for failures that were caused by a disease process, known as schizophrenia. In the last year or so I have been able to feel proud of who I am. I'm not successful by most people's standards, but I have a lot of individuality. As my volunteer says at the end of telling the high school classes about his experience of schizoaffective disorder, "I got my life back". Since we only have one life on this planet I really couldn't ask for much more.
I graduated from university with a double major in biology and anthropology. In anthropology, I suspect recovery would be strictly defined by the contribution you make to your community, and technically only the contribution that is valued by your community. In our culture that usually means you get paid by someone for what you do, and you pay taxes on what you earned, although volunteers are also sometimes recognized for their contributions. Getting paid is a really good indicator of recovery from schizophrenia, particularly when it means you become self supporting. I've noticed that you get treated very differently when you are able to contribute to your community. You get treated with respect. It's probably one of those hard biological facts of life, like growing old. Everybody grows old and everybody has to contribute to the community to be a valued member of the community. Being able to make a valued contribution to your community typically raises your self esteem, your sense of worth, and your self confidence to try new things. It's a good feeling. As a biologist I would measure recovery by annual earned income, and quality of human relationships, particularly romantic relationships that lead to successful progeny. Biology is mostly about leaving successful progeny, successful in the sense that they flourish, and also leave successful progeny. But as a human being I would measure recovery by how I felt about myself, about being proud of my individuality. I more or less manage my own illness, and I've adapted to what life has to offer. Time waits for no one, and the usual meaning of recovery would involve turning back the hands of time. As a 53 year old I can't expect to relive my twenties, even if I really want to.
People experiencing a first psychosis tend to recover well on a low dose of medication. So they tend not to receive very much attention from the medical system. There are so many other people who are so much "sicker". The trend now in mental health is to focus services on the SMI clients, the "Seriously Mentally Ill". Unfortunately the more psychoses you experience the more likely you will become one of that population, but by then the damage is done and can't be undone. Some researchers believe most of the deterioration in functioning happens in the first five years of illness. Many researchers believe the longer the DUP (duration of untreated psychosis), the longer it takes for someone to stabilize on medication. More psychoses tend to result in a decreased response to medication. From what I have been reading the greatest gain to be made is decreasing the initial DUP, from 2 years, which is average, to less than six months. But without good relapse prevention those gains will be lost. A researcher from North Carolina was saying the other day that the first five years of illness set the stage for the rest of the individual's life, which gives an individual the rest of their lives to experience recovery, whatever that means for them.
"Quality of life" is another philosophy driving support and rehabilitation. Schizophrenia can really do quite a lot of damage to functioning. For example, I find personal hygiene requires a lot of effort because I don't enjoy taking showers anymore. I don't enjoy brushing my teeth as much as other people do. These are daily activities that can't be avoided. I can't read very much at all. Reading is one of the things I lost to schizophrenia, so I will probably never be able to return to school or pursue a new career. Many people with a history of schizophrenia carve out a niche that doesn't involve functioning in an intensely competitive environment. It's a different life, one that doesn't involve much money, earned or otherwise, one that other people don't value very much, but the quality of life can still be enjoyable. Quality of life is a subjective experience and there is a vast body of literature on the subject. Recovery to me is essentially a way of measuring quality of life.
People with schizophrenia tend to be very isolated in the community. Ten years ago ordinary people seemed so different to me. They were in such a hurry, and moving to a very different drum beat. I had trouble even talking with them, and my lifestyle was so different. They had partners, families, careers, kids, homes, cars, new clothes, hobbies, recreational interests. I had none of that. There is a trend now to encourage consumer communities. This is happening across the province of Ontario. When I read the The Schizophrenia Digest started by Bill McPhee, I feel a member of a community of people across the country struggling with schizophrenia. The articles are getting better and better and I usually read each issue cover to cover. People may feel a member of a consumer community and their contribution and relationship is to that community.
Sometimes these communities take a radical, passionate, and negative quality where the contribution is telling everyone to stop taking their medication, that psychiatrists are all incompetent, and that it's the medication that is causing brain damage. The emotional turmoil you experience with mental illness, a result of the disability and loss of functioning you are living with, coupled with the social isolation, and the fear of being a failure, leads people to blame psychiatrists for their problems. In reality if someone recovered when they stopped taking their medication they probably wouldn't be hanging around in a consumer community to tell everyone about it. They'd get married and disappear into the fabric of everyday society, maybe become a geologist or an astronomer, move to the California or Hawaii and live happily ever after. That's more or less what I would want to do if I never had schizophrenia.
Because I went to university I have considerable respect for psychiatrists. Medical students were considered to be some of the brightest and luckiest students at school. Now they have become my professors, and I am learning from them what they are learning as perpetual students, which is how one of my professors at university described himself. "All things being equal let the simplest explanation prevail", is called Occam's razor, and it is the guiding principle of academia. Psychiatry also progresses by this consensus just like academia and as such it's state of the art. "Evidence based practice" is simply medical language for using treatments that have been proven to work, ideally by randomized controled trials, RCTs, lots of them. They are controled in the sense that the results of the treatment are compared to a control group that received everything else except the treatment in question.
Consumer communities are also beginning to make valued contributions to the community through the "The Alternative Business Movement" in Ontario. These are Consumer owned and operated business ventures. It allows people to become contributing members to the community in a joint economic venture with other consumers. These businesses typically don't make a profit per se, in fact they don't quite break even, but that is by design so that even people who are seriously challenged by their disability can work in paid employment. If you're ever in Toronto you should have lunch sometime at the "Raging Spoon", quite a good restaurant by all accounts.
Nash was still a student when he developed his non competitive game theory, but I can't help but wonder what people forced out of the competitive arena can contribute, what they want to contribute. I managed to stay in university for six years, spending most of my time in the library. Even in my Noah's Ark, the cube the aliens constructed in space for me and my blue wife, there was a library at the centre of the island in the Zyder Sea. Ironically, nothing was more valuable to me than the truth. I have always wanted to contribute Konarak, the temple, the lifestyle, the music, the tantric powers of sexuality. It's my equivalent to noncompetitive game theory, or maybe just the final outcome of noncompetitive game theory. I thought I understood the driving forces of human evolution, the existence of antigravity, the nature of civilization that predated the last ice age, the cause of overpopulation and World War Two. You'll find a few crazy pages on this web site, my persistent delusions, which aren't going to earn me any money, or anyone's respect, but who knows, some day people might see them like a van Gogh painting or a noncompetitive game theory. There's both a lot of university education and some very loose association in them. persistent delusions
I started to make a valued contribution to the community after a number of years on medication. Both my case manager and psychiatrist suggested I volunteer somewhere. I was complaining to one that I had no money, and to the other that I had no girlfriend. So I tried volunteering without much success. Even the minimal requirement of showing up somewhere when I said I would was too much for me. I was just about to give up on Maclean Hunter Community television, when I took part in one of a four part series on mental illness. I proposed a ten part series on the mental health system to the station programmer, and detailed each episode of confirmed guests. Suddenly I was a producer, but when the taping was finished I quit that volunteer job. About then I started part time paid work delivering flyers and then newspapers. I had to swallow my pride to mix with ten year olds delivering the daily paper, and it's quite a challenge really, because you deliver them every day, and every day before 5 PM, except weekends when it's 9 am. I liked it but was a little embarrassed collecting from customers. It also became fashionable to have people with a psychiatric diagnosis sit on various committees and boards, and I could handle an hour at a time with only a little difficulty.
I'm slowly adapting to both my disability and the community I live in. Even with the paper route, I could look back to an accomplishment that I had earned money from, and I could start spending that money on whatever was important to me, like new clothes and computer stuff. I was making 70 presentations a year now on schizophrenia or mental illness, and half of those are to high school classes. I got a lot of positive feedback and support, particularly from family members and other consumers. I received national, provincial and municipal awards. I've been published in the "Schizophrenia Bulletin", in "Psychiatric Services", and twice in the "Psychiatric Rehabilitation Journal". My employers were very accommodating. I wrote the job description for the position I had and I had a pretty free hand in when and how I worked. This web site has become my primary volunteer contribution and it's been quite successful. I live by the noncompetitive game theory that Nash proved mathematically. I try to avoid competitive struggles of any sort.
Recovery is a very appealing philsophy, that involves asking the patient what recovery means for them, what is important to them. They may not appreciate the value of medication in controling the psychosis of schizophrenia, but they will likely identify a problem caused by illness, such as social isolation, poverty, celibacy, and unemployment, and they will measure their recovery by what is important to them. It's important to understand the dynamics of the illness if recovery is driving treatment strategy. The illness begins in the prodrome which most mental health systems tend to ignore at the moment. With first psychosis programs, and reductions in the DUP and effective relapse prevention, recovery will become more likely. That is a hopeful but educated guess on my part. Nobody knows for sure yet. Medication is the foundation for recovery but recovery happens in the community and life in the community will be profoundly affected by the illness. Schizophrenia typically emerges as an individual is making the transition from dependent teenager to independent adult, and there needs to be some recognition and appreciation of what the individual experienced during that time if recovery through treatment is to become a viable option.

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prodrome