Schizophrenia and me

Mark Benniman
Jun 27, 2019 · 10 min read

I have had schizophrenia or schizoaffective disorder since 1992 when I was studying Information Science at Aberystwyth University in the UK. I had been socially withdrawn for a few years before that but I’d never had contact with psychiatric services until I started to hear voices in the autumn of 1992 when I was 24 years old. I was sectioned under section 2 of the mental health act and kept as a patient for about three weeks, I then carried on with my course and saw a psychiatrist as an outpatient during the next term. I had a relapse in the summer of 1993 when I stopped taking my medication for the first time. I had very frightening voices in my head for the second time, this time I wasn’t hospitalized instead the doctor prescribed me a medication called Stelazine and again I saw a psychiatrist as an out patient, I was 25 years old at the time and had just dropped out of Aberystwyth because I found the course too difficult for me.

I spent the next year on out of work benefits but really wanted to better myself so I applied to study at Cheltenham and Gloucester College of Higher Education to do a Higher National Diploma in Business Information Technology, I was accepted and enjoyed the course. I took the Stelazine and heard voices on and off through the two years of the HND but passed the course with merits and distinctions. I also worked for the college as a night porter at the time and was first aid at work qualified. I then wanted to top up to a degree and was given funding to top up to a Bachelor of Science degree in Business Information technology with business management. I passed an Ordinary degree in 1997, I was on the honours programme but I left six month early and moved to Hong Kong. I still had voices occasionally and moderate paranoia but I functioned very well in nearly all circumstances. I taught business English and activity classes in schools for a lot of the time I was in Hong Kong. I moved to Thailand in 2001 and taught at a university in Bangkok, I carried on having occasional voices and paranoia but I worked well and it was a good year.

In 2002 I was given a place doing teacher training at Greenwich University specializing in further education and English for speakers of other languages. I passed the course which included enhanced criminal checks and occupational health screening, the course was at master’s level, I was 35 years old and according to my research only about 5% of the adult population of the UK were qualified to that level at the time. I still only had that section 2 in 1992 as far as my mental health was concerned. I went on to teach at a college in West London for two years teaching business communication. I was four levels up the lecturer scale when I resigned in 2005 and I was 37 years old. I did have some psychiatric treatment while I was working there at my request but they initially treated me for depression. I found the workload quite stressful and it was difficult financially with things like housing and transport.

When I left my teaching position I went to live with my wife and child in Paris France and it was there I felt very strained and sought the advice of a French psychiatrist and he said ‘so you’ve been diagnosed?’ I said yes and he said ‘then you need to take these and take them for a long time do you understand?’ (Meaning antipsychotic medications) I just wanted some relief from my sense of strain so I said I understood but the medication made me feel really physically unwell and I stopped taking it. It was about this time I developed a condition to do with my eyelids, they kept closing but it’s only a guess that the two things were related.

My second child was born soon after and I was 38 years old, we moved back to Thailand in 2006 and I taught English again for about six months before returning to England to try and get some help with the problem with my eyelids. I don’t think I was a burden on the health service, more an educated person of our country who would have dearly loved to have been successful here in the UK but always found a complete lack of opportunity that I still find to this day even though I’ve been here ever since and remain quite highly motivated and qualified.

I’d like to say that’s the end of the story but unfortunately, there was a bad turn of events. I had dealings with the psychiatric crisis team in early 2008 and they insisted on me taking my antipsychotic medication in their presence and a few weeks after their intervention I had an argument with my mother and she left the house, the next morning two doctors, a social worker and the police arrived, there was a lot of debate but I wasn’t prepared to double the amount of antipsychotic I was taking so I was sectioned under section 2 of the mental health act for the second time, sixteen years after the first time. I had just turned 40 years old and I spent the full 28 days on the ward, being forced to take a medication that made me feel really physically sick. I came out of hospital and moved into a town centre bedsit, I couldn’t even afford the deposit, I had to use some of my children’s savings. I lived there for the next 5 months. I did have a few interviews for work and was offered 12 hours per week teaching at a college in London but I couldn’t find anywhere to live on what they paid.

I had another voluntary admission in December 2008 for about 10 days over Christmas but in January 2009 I went to London to meet my wife and children as she had been fortunate enough to get a posting there in her job.

I’m not sure how it started but I was assigned a social worker in London and had out patient appointments with a psychiatrist and a psychologist. With the psychologist I would give my opinion as to my frustrations and spout facts and figures, he would agree with some and disagree with others. My wife and I were also offered marriage guidance with psychiatric services and we went once a week for an hour for about ten weeks. If I remember rightly the hour would go a bit like a talk show and they would often agree with most if not all of what I said, but that said over that four year period we lived in London I had two voluntary admissions and just before I left a section 3 in hospital which is fairly serious although I only stayed in for 28 days. A funny thing was there was never anyone waiting in the waiting room when I had my out patients appointments which I always felt was a bit ominous certainly when you hear that about 1% of the population has schizophrenia, you’d think the place would be so full there’d be no room to sit down.

It was a time of a lot of stress for my family for which I’m very sorry. They returned to Thailand in 2013 just after I had been sectioned under section 3 of the mental health act, although I don’t think I showed many signs of illness it was mainly because I had refused to see the social worker and that was four entire years after I first met her. When they left I had a great sense of sadness. To think that just a few years earlier and barely a few miles away from where I was I had been only one level below senior lecturer in business communication.

I was allowed to come back to Barnstaple a month later under the supervision of my mother who had some mental health problems of her own at the time. I wasn’t happy about it and in a way I felt something was being said in an otherworldly sort of way but that had always been a predominant symptom of my illness anyway. My main symptoms were paranoia, seeing special meaning in random events and voices in my head that would in the early days especially be quite threatening. As time went on I also talked to myself when no one was around and unfortunately later started talking to myself when people were around. In fact, I could talk to myself for hours quite happily out loud, I did get answers as a matter of fact, not so much voices, it was more that I would tap my teeth together and that would form the backbone of the communication or even as time went on I would open my mouth and the answer would literally be spoken by me but come from some other part of me that I wasn’t conscious of.

I have had one other hospitalization since, I had a section 2 under the mental health act in 2017 because I argued with my psychiatric nurse although to be honest I did get quite annoyed and did raise my voice. The point was I wouldn’t take my medication and her and my brother were trying to change my mind. I had had monthly appointments with the psychiatric nurse from 2013 to the present, again the appointments would basically go like a talk show, well, I thought so anyway, (not that I’m saying I was in a talk show just that’s how articulate things were said) again there was rarely ever anyone in the waiting room, just me, and that was monthly in a town of 30 to 40 thousand fairly simple people certainly educationally, nearly 40% are educated to level 1 or below where as I had two level 7 qualifications, and I was a qualified teacher at one time but there I would sit patiently and still do sit in an empty waiting room waiting for my turn to see how the previous month has gone.

A few facts and statistics about schizophrenia are quite amazing: The charity Mind said schizophrenia will affect 1 to 3 people in every 100 during their lifetime, a European document on mental illness and inclusion said that as many as 4.5% of the population will suffer from schizophrenia and other major psychotic disorders in their lifetimes and that in any given year 1% of the population of Europe was psychotic, amounting to 3.7 million people.

“You’ve got to be joking’ is what I’ve thought with incredulity many times as things have happened to do with my mental health. I’ve always been respectful of the health service and doctors in particular, I felt I’d earned a bit of license from them in return but don’t think I’ve ever really been respected in that way despite being a science graduate and a qualified teacher which on some measures isn’t that different to the basic training of a doctor.

I used to be on incapacity benefit when I developed the problem with my eyes and that later changed to employment support allowance. I had a medical review in 2017 and the person said I didn’t score enough points to carry on getting ESA that was about a month before I was sectioned. While I was in hospital one of the people who helps patients with things like appeals looked into my case for ESA and sent them an appeal letter on my behalf, they overturned the original decision and I was placed in the support group of ESA because I had raised my voice at my psychiatric nurse the decision was that people need to be able to travel to work and be at work without fear of being accosted, again I thought ‘You must be joking’ I was going to try and clarify what they meant but I never did and I’ve been in the support group ever since. Actually, an important point is I’ve been on a depot injection ever since which I have found has few side effects apart from some lethargy and on the whole is very beneficial to me, no paranoia, no voices, no seeing meaning in things and very little talking to myself.

I’m not sure we really understand what the symptoms of psychosis really mean anyway and one day people like me may be vindicated and everyone will be shocked at how badly we were treated and with such a lack of respect for our faculties, after all we’re not criminals. I have a fairly high IQ, a reasonable EQ and an education that in 2009 measured in the top 7% of adults in the country and I’m now in my 50s but no real success in work although I have had a few good jobs that side of life has never offered me much of anything but then amazingly another statistic I read is that only about 8% of people with schizophrenia are in any kind of work compared with 72% of the general public.

Some facts:

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https://ilcuk.org.uk/wp-content/uploads/2018/10/MovingToSocialIntegration.pdf

If you take the 4.5% figure for the lifetime prevalence of schizophrenia type illnesses that’s nearly one in every 20 people.

I have studied full time at university for five years and taught for seven years but the way things are with severe mental illness as it’s called, I may as well not have bothered doing anything for all the good it has done me, but I think things are slowly changing.

Some research I did

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A work photo from the year 2000 when I was teaching in Hong Kong, I was 32 years old and had been suffering from schizophrenia for about eight years.

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