Mental Health: The road to diagnosis is filled with twists and turns

If you hear voices you are not alone. I do too. Research shows as many as 10 to 15% of us do:  that’s about a billion people – it’s more common than left-handedness and more common than living in North America..

You don’t hear about it simply because it’s not something people feel safe talking about, and no wonder.

And if you hearing voices it does not necessarily mean you are ill – but if it leads to you becoming isolated then you can become very ill indeed.

About two thirds of people who hear voices experience it as a good part of their lives . Even those who do find it distressing can find ways to make life with voices easier: many find approaches like meditating and simple mindfulness helpful. Having a safe place to talk about it can help a great deal too.

Learn about the work of hearing voices movement – 25 years old this year.

For more resources on hearing voices see beneath the Star article  below – or go to the search tool and search for hearing voices.


Article 3rd in series (of 3) in Toronto Starpart of series on how our mental health system is failing so many of us
Extract from Toronto Star by Chantaie Allick

Mental Health: The road to diagnosis is filled with twists and turns

Published On Tue May 29 2012

Young people and adults who want or need counselling have different needs. Jimmy found help at East Metro Youth Services, whose What’s Up Walk-In clinic makes it easier for young people to find help.

Chan Bak has waited three years for a clear diagnosis to explain his delusions and strange disorganized behaviour. During that time, he’s had several psychotic breaks, four hospitalizations and seven psychiatrists. He has lost his job and has moved back home with his parents in Toronto.

His struggle with mental illness began on a warm night in August 2009 when police found him walking on the shoulder of Highway 85. The 27-year-old software engineer was in the midst of his first psychotic episode, deep in a delusion, walking to the home of a friend in Woodbridge 100 kilometres away.

“I remember talking gibberish to them,” says Bak, “though when they asked me where I was going I told them the exact address in Woodbridge. I remember them asking me, ‘You’re a smart guy. How long do you think it’ll take for you to walk there?’ And that’s the first time I actually thought about it.”

The officers took him home, spoke briefly with his roommates and left.

Doctors later told Bak that he had had a brief psychotic episode. They have also told him he is bipolar. Most recently, he has been diagnosed with a form of pre-schizophrenia. He has been prescribed Risperidone, an antipsychotic drug.

But he’s no closer to knowing what ails him.

Bak’s experience is not unusual. There are 6.7 million Canadians who suffer a mental illness. Often it is underdiagnosed, misdiagnosed or undertreated, according to the Public Health Agency of Canada. It can take months, even years, to diagnosis certain illnesses and, years later, a patient can receive another diagnosis entirely.

The difficulty in getting a diagnosis is a deep crack in the mental-health system. And it is one that is hard to fix. Unlike a biopsy to identify cancer or a glucose test to reveal diabetes, there is no diagnostic tool to detect mental illness. Conclusions are based on observation and it can take years for doctors to get it right.

The diagnostic interview is “kind of like being a Sherlock Holmes and sorting out what is the cause and then what to treat,” says Dr. Thomas Ungar, head of psychiatry at North York General Hospital.

Interviews, blood and urine tests, X-rays and questionnaires, help build a patient’s profile. But lacking a physical test for mental illness a degree of uncertainty always exists.

A great deal of research has focused on understanding the biochemical underpinnings of mental illness. Some researchers have begun to explore the developmental and physical causes of severe mental illness.

But for now, this crack in the system — the first that patients encounter — can delay care and healing. For patients like Bak, it can mean years living on a precipice, facing a life-altering diagnosis but with no definite answer. All Bak knows for sure is that for the past three years he’s lived in a world of delusions and psychotic breaks.

In the daysleading up to the highway incident, the quiet software engineer became excitable and talkative. He was sleeping at strange hours, smoking marijuana, consulting Google and developing notions on how the world works. He started a blog to express his ideas. This served only to deepen his delusions.

He took an impromptu trip to a Niagara casino with two friends but once there abandoned them and checked into a hotel. After a few hours, he decided to visit a friend in Calgary and headed to the airport, where he realized he had no money for a ticket or identification. He called his Waterloo roommates — one of whom has a mother living with schizophrenia — who went to the airport and persuaded him to return home, where he took sleeping pills and went to bed.

When he awoke, “the world didn’t seem real,” says Bak. It was as if he were in The Matrix. That was when he decided to visit his friend in Woodbridge. A few days after the police returned him home, Bak’s friends had him admitted to hospital.

He was there a week or two. The details remain hazy.

“My first hospitalization was dreadful,” Bak says. “The realization that I was actually hospitalized didn’t dawn on me until the second or third day when I was forcibly taken down to the ground by one of the nurses.” He had been trying to escape through an open door.

The hospital psychiatrist said he had experienced an acute psychotic episode but offered no real explanation of what that meant. He was prescribed Risperidone and sent home.

Since then, the 27-year-old has received several diagnoses, depending on how long the episode lasts.

If symptoms (delusions, hallucinations, disorganized speech) last for less than a month, it is called an acute psychotic episode.

If the symptoms last longer than a month, it is called schizophreniform.

If they last six months or longer, the diagnosis is schizophrenia

“I almost find it meaningless. Because psychosis, schizophrenia, schizophreniform — they’re all just duration based. There’s no real insight into what the actual experience of it is,” Bak says. “A delusion is so — it’s so visceral you actually believe it. You actually know that it’s true.”

He left the hospital feeling humiliated and unnecessarily detained. “The difficulty with my condition was that an illness for which there are no physical indications is easy to deny,” he says. (He’d had an MRI and CT scan during his hospital stay that came back normal. )

Bak is not typical, in that he is lucid when he processes and explains his experience. Even as he describes terrifying experiences, there is a calm about him.

But before the highway and long before he came to terms with being mentally ill, Bak was just a kid — an exceptional one.

“I don’t like to say this about myself, but I’ve always been told that I was very smart,” he says.

The family moved around a lot — he was born in Korea, moved to Canada, returned to Korea and also spent time in California.

In high school, he was in a specialized program studying math, science and computers. He says he got into the University of Waterloo with one of the highest entrance averages in Canada that year. He did co-op placements at some of the largest online firms and in early 2009 was offered a job in Seattle with a six-figure salary when he graduated that year. He turned it down to stay in Toronto.

But in the end, he lost his job and returned to Waterloo that summer.

Bak knows first hand the complexities involved in diagnosing mental illness. Psychiatrists use the ever-evolving Diagnostics and Statistics Manual, or DSM. As new knowledge about illnesses comes to light, the manual is updated, sometimes splitting or adding diseases. Psychiatrists match symptom clusters to illness with little explanation of the cause. The manual is in its fourth edition and is expected to be updatedin 2013.

Psychosis can be caused by any number of ailments, including Lupus, or drugs, such as anesthetic. It is also a symptom of a wide range of mental health issues. This is why Bak could be diagnosed with acute psychosis by one doctor and bipolar disorder shortly after by another, says Ungar.

Bak describes the diagnostic interview process: “How it works is that they talk to me (and) then they talk to the people who brought me in.”

“It’s not easy for either the practitioners or the patients,” says Ungar. “It can be frustrating, but it’s just the reality of how we work.”

The process of diagnosis — in the case of schizophrenia, the persistence of symptoms for at least six months — has an inevitable effect on care. Research shows that early intervention in psychosis is effective in avoiding another episode.

Bak was most recently diagnosed with schizophreniform, which, if untreated, often precedes a diagnosis of schizophrenia.

He doesn’t like his medication and takes the drugs only when his friends urge him to. He has found support from a friend who lets him talk through his hurtling thoughts. And he has found solace in meditation; he meditates on his balcony, perched on a pillow, three times a week for 20 minutes.

Bak came to meditation after reading Buddha: A Story of Enlightenment by Deepak Chopra. He thought through his experiences and realized he needed to turn his brain off, to stop thinking sometimes.

“My forays into Eastern contemplative traditions have given me tools to pursue ways to lengthen the silence of the mind, at the same time conditioning it away from negative emotions. I strongly believe that these tools are much more relevant to mental illness than any prescription drug, and that these tools should be made more available to patients of mental illness. I don’t know how anyone else copes without them.”

It’s clear talking to Bak that his own assessment of his illness gives him greater comfort than the uncertainties and vagueness of the various medical labels.

“I believe that I understand my disease,” said Bak. “My friends would say, ‘No, you’ve said that before, but this time around I feel like I’ve narrowed it down.’ ”

Read original at–mental-health-the-road-to-diagnosis-is-filled-with-twists-and-turns

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6 Responses to Mental Health: The road to diagnosis is filled with twists and turns

  1. caramarie says:

    I am writing from the UK where we have the most shocking care. My younger daughter was affected age 13 and could hear voices. This was because she was severely bullied at school and this trauma I believe caused this but then she was put on Risperidon. My father also suffered from seeing things or rather delusions – he had Alzheimers and was put on two anti-psychotics. Now age 25 my elder daughter the victim of a terrible incident turned to her doctor and got prescribed anti-depressants. Her looks/behaviour changed and she became unrecognisable and was aggressive and violent like never before especially when she withdrew from these in one go. Since then the NHS has put her on a cocktail of mind altering LSD like drugs – about 14 to be precise. She is currently a patient at the Royal Bethlem Hospital but they do not deserve this title in my opinion. The leading professor – Professor Murray recommended a drug free period and now is distancing himself and I am furious – so furious that I have just written to the entire Royal Family. The Government could not care less about the mentally ill over here. This hospital is like hell on earth – it is like prison. Patients are couped up on the wards for too long yet the grounds surrounding this hospital are beautiful. You never see many patients walking around outside they are all stuck in and they have hardly any visitors. I am not popular and my name is like mud in the files and now they do not want me to see the latest. The one thing my daughter did not want was more experimentation and that is what they are doing to the point she did not even know what tablet she took and they put her on Clozapine and I am fuming about that – this awful drug caused her to have heart problems and feel so dizzy she asked to change wards so that she was not on the first floor. They tried to keep it a secret from me and have tried to replace me as nearest relative as I refused to give permission for a SEction 3 which is 6 months detainment. I am still the nearest relative but had to back down as I stood no chance and had no time to get legal representation – in just 1 day. Anyway I have a website called on the Posterous site in which I detail the shocking care in the UK. The Olympics is coming up here soon and what a fuss they are making over here about this and spending a fortune to show off to the world. I was not able to get one single ticket and my daughter used to like running and sports but now can barely walk and wanted me to bring her a walking stick. I want the world to know that this hospital does not respect patients human rights and I have letters from a former patient detailing what goes on behind closed doors. I would like something like Earth House set up over here – I appointed an Orthomolecular Psychiatrist and that did not go well with the team – also I am in touch with Dr Ann Blake Tracy who has given me wonderful advice and I made sure this psychiatrist and professors got to hear this advice and it did not go down too well when I brought on the ward all these books and cds. They should be grateful that I have done so much research as they do not have time apparently to read things properly. I also brought oils to the ward, electronic cigarettes and supplements. Now I only am allowed 1 – 2 hours escorted leave with my daughter. This is disgusting care and I have a good mind to organise some demonstrations outside of this hospital but I have now found a reporter who hopefully will give good coverage of this abuse.


    • Hi caramarie, I’m in Toronto but I’m from UK. there are certainly too many cases around the world of people being treated badly.I’m sorry to hear it’s happening to your daughter. don’t know what the windsors can do but do you know about the hearing voices network? and intervoice? you can try the intervoice facebook forum here… I understand Prof Murray will be visiting the World Hearing Voices Congress in Sep in Cardiff- he’s recently been in press talking about research showing voices and traua connection.. You might also want to contact the critical psychiatry network to see if you can find some support or alternative psych team to work with your daughter who are less eager tpump the drugs..


  2. Hello to Toronto from Minneapolis, Minnesota
    Thank you for your response. I feel as you do with respect to doing all we can do in the name of those who can’t often speak for themselves with much power and authority. We must be their voice as well. I knew by my going against main stream thought, I’d lose my job. Too many of my long term patients were reaching goals never meant for them to reach by the mental health community.
    Nor by any family or staff other than me. I was reprimanded that too many were being discharged into less structured environments. They “needed to keep the beds full.”
    I told them that they could tell the visitors and family and health department that, but for me, I was hired to do what needed to be done to improve their lives.
    It was worth it to me. I miss those people. But did get another job in a half way house for people transitioning from state hospital to eventual if possible, independent living.
    You are a blessing to those you serve.


  3. I truly appreciate this story and so many like it. Having worked as a therpist in long term mental health, I know the horrors of patients who have been diagnosed and misdiagnosed and rediagnosed.
    And with each practitioner, there is another new med and new treatment.
    The patients I had care over, had been institutionalized for decades in some cases. They had received the standard “lets give them EST once twice or three times a week for no other reason than to control the masses in the institutions. Lack of staffing, funding and generally not seeing these individuals are persons instead of problems, made caring for them by the state, a burden.
    This is just sad. And by the time they came to me, I sought methods as you instill yourself to help someone reach their highest level of wellness.
    I incorporated meditation, group therapy as well as individualized therapy. And of course meds couldn’t be within drawn until certain measures were in place and as the patient was able. I wanted what was best for the person, not what was best for me.
    But in the end, many had been greatly reduced on meds or dosages. And some were living in assisted living apartments. But all were in a better place mentally. It is amazing how when you spend quality time and effort and work with someone and not just do what you think is right, the butterfly emerges. And their lives, are so much better for it. And the reward for me was such joy to see them being more of who they were always meant to be.
    I applaud all you do. Your work is valuable and rare given the general mental health system.


    • Hi Yisraela, welcome, and thank you for your heartfelt message and your support. We think that many people working in the “mental health system” want change and want to change: many are fearful and waiting for something before they act. We start to create a new world, I think, when as you have done: each one of us does what we can in that little piece of the universe that we occupy. kevin.


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