I Thought I Was Too Smart for Schizophrenia

By Erin Emiru (nee Hawkes)

I have schizophrenia, they tell me. They line up my symptoms and thrust the diagnosis in my face. So here are your pills.

When I stop taking those medications I lose my grip on reality, but I don’t know this. They – my psychiatrist, a Security guard, the police – bring me to the hospital (again) and I am told (again) that I have schizophrenia.

No, I don’t. People with schizophrenia don’t have a Master’s degree in Neuroscience. I’m simply too intelligent to have schizophrenia, right?

Then why do rats eat my brain, why do Voices yell at me, and why am I being stalked by a homicidal man with a sniper gun (I’ve got proof)? I assume it is normal. I don’t have any friends and I have withdrawn from my family so no one but Them (doctors, nurses – everyone in league with the Enemy) diagnose me, treat me. So here are your pills.

I remember my first antipsychotic. I was in the psychiatric hospital after a failed suicide attempt and, after drawing me out, my psychiatrist decided to start me on risperidone. She did not tell me what it would do. Soon, my Voices were quieter, quieter, quieter. Rats stopped chewing and the sniper stopped tracking me. Wow, I thought. Those were symptoms? That was schizophrenia? The scientist in me knew it wasn’t a simple placebo effect, since I had had no idea what those little pills were going to do. I became open to the idea that I might have schizophrenia.

Yet repeatedly, over the next half-dozen years, I would leave the hospital quietly, only to be forcibly returned after “decompensation due to medical noncompliance.” That is, I fell into the oh so common trap of thinking: “I am doing well. I don’t need these pills any more. I’m cured.” Round and round the revolving door.

You would think that after all of this, I would surely realize that I had schizophrenia. I didn’t, though. I was under the heavy spell of anosognosia: the physiological inability to recognize that one has an illness. It is common, and strong, in schizophrenia. But in me, equally strong was a scientist. So, experiment number one: recall that first antipsychotic? Well, it did strange things, things I was not expecting.

My second hypothesis: maybe I was just in it for the attention. When psychotic and certified in the hospital, I would bash my head against the concrete wall until both it and I were bloody; that bled the brain-eating rats out. It also earned me restraints, physical and chemical, which I raged against. I screamed and kicked and cried but the strong Security guards tying me up and the nurses with injections (rat-laden!) for me always won. That was attention, I reasoned. So I decided to do it. Bang head, fight restraints, scream over injections… it was a good show, but it felt foreign. I was an actor, not a true patient, that time, making me realize that all the other times had actually felt real.

Then there were the Voices that harassed me continually. They yelled at me to kill myself, forbade me to buy even a coffee, and hissed at me if I dared talk to anyone. When these receded with medication, I later – when everything schizophrenic seemed out of focus – I attempted a third experiment: I tried to create Voices. I thought really hard but to no avail. All I could generate was the “little voice in my head” that everyone experiences from time to time.

Finally, convinced I was too smart to have schizophrenia (an idea of mine echoed by an arrogant psychiatrist), I fought to keep an A+ average at university. I earned prestigious scholarships (two NSERCs, a Michael Smith scholarship, and various others). That’s not something someone with schizophrenia does, right? No; there are other people with schizophrenia who attain graduate-level education. It is very hard, but it can be done, particularly when the person is stable on medication.

So a neuroscientist with schizophrenia. I tried so hard to prove I was immune to schizophrenia, but because of my experiments, I am convinced. It was a relief of sorts: an explanation, a treatment, a hope. It came to prove not that I didn’t have the disorder, but that I can live beyond it. For me, medication is key; taking it reliably, the master key. And I become a person with schizophrenia who is well.

This blog first appeared in Huffington Post on March 17, 2013. Erin Hawkes (now Erin Emiru) is the author of When Quietness Came: A Neuroscientist’s Personal Journey With Schizophrenia published by Bridgeross and available in print and e-book format.

When Will All Mental Health Professionals Learn to Respect Families?

By Marvin Ross

Families of the mentally ill are the tireless workers who provide support and advocacy for their ill relatives at tremendous financial, emotional and physical costs. The families also are the ones who push for reforms from reluctant elected officials. It was families in the US who formed the National Alliance on Mental Illness (NAMI) to fight for their kids. In Canada, it was the late Bill Jeffries, a family member in Oakville, Ontario, who formed what was originally the Friends of Schizophrenics in Canada (now the Schizophrenia Society).

A group of family members in the US (partly tongue in cheek) call themselves the Sisters of Perpetual Determination to indicate their resolve.

Families fight for their ill relatives whatever the illness they suffer is – cancer, CP, autism, schizophrenia – and that is as it should be. But when it comes to mental illness, we are often not consulted and are shunned and talked down to by professionals. Just recently, a group of very dedicated families had to fight for months to have a representative on an Ontario Government Committee set up to evaluate mental health services before a family member was appointed.

But do not consider the Family Outreach and Support Program (FOR) in the same class as these aforementioned family advocacy groups. FOR which is funded in part by tax money is being integrated into the Canadian Mental Health Association Toronto Chapter. Despite the name FOR, from the writing of its founding executive director who stepped aside in 2015 but is still on staff, this group is not family friendly in my opinion.

Karyn Baker says that she is a mother of a child with mental illness but in her article entitled Families: A Help or Hindrance in Recovery she reveals what I consider to be disdain for families. I’m not sure if she still believes what she wrote as the article is no longer online but it was discussed by Susan Inman in a Huffington Post article and I do have a copy.

The article is a chapter in a book called Alternatives Beyond Psychiatry edited by a founding member of an organization called INTAR or the International Network Toward Alternatives and Recovery of which Ms Baker is or was a member (she lists her membership on her CV). The organization believes that emotional distress is often labelled as psychosis.

Here is what Ms Baker writes:

• “traditionally many families have not been given the information or strategies for helping their families in the recovery process. As a result, families have tended to unwittingly be a hindrance in their relative’s recovery”
• “There was little, if any, mention of recovery and no critical examination of the mental health system from a trauma-informed and anti-oppression perspective. These programs created like-minded thinking between families and mental health professionals, which further reinforced the limiting idea that mental illness is a disease and must be treated with medication or otherwise, recovery is not possible.”
• “In North America, the alliance of mental health professionals and family organizations has entrenched the medical model of mental health distress and has led to an extreme over-reliance on psychiatric medications and coercive mental health legislation. A collateral damaging consequence has been the divisiveness between the psychiatric survivor organizations and family groups. Psychiatric survivors have been highly skeptical of family involvement in the recovery movement. Often survivors have felt both the controlling and paternalistic (and often traumatizing) experience of both their own families as well as those of large family advocacy organizations.”
• “The key messages that families report taking away from the course are that: recovery is possible even without any professional intervention (for many families this is the first time they have heard this message); hope is the cornerstone to recovery – it is almost impossible to recover without hope and the family’s role is to “hold the hope”; to avoid creating learned helplessness by being overly-involved; to support risk-taking and giving the relative the dignity and freedom to fail like any other human being; to let go of controlling relative’s choices – this is their recovery journey; to stop viewing everything from a problem orientation and start building on strengths; to view madness as a human experience; don’t use coercion or forced treatment; explore alternatives and use advanced directives.
• Families also have reflected back on the importance of the group process in learning about recovery and their own behavior. Families want a place that does not perpetuate their guilt or shame about their own role in wounding their relative but helps them to acknowledge their role and behavior and help them to make change in a safe environment. Many families acknowledge that they started this journey as either uninformed or misinformed and that often their natural intuition as to how to be helpful was actually counter-productive. Families also become aware of their own internalized discrimination or mentalism about people with mental health issues. Families learn to use language that does not hurt or hinder recovery.”

None of this is evidence based nor is it family friendly unless families admit that they have been controlling and paternalistic towards their ill loved ones. Point two from her paper is still the raison d’etre of the agency as it is prominently displayed on their website. An excellent critique of the absurdity of their “trauma-informed and anti-oppression perspective” compared to the medical model was recently provided in an excellent article in Clinical Psychiatry News entitled Unmasking Trauma-Informed Care. It makes for good reading.

And my tax dollars go to programs like this when the money could be used to provide more psychiatric beds that are desperately needed.

 

Journalists, Medical Research and Medical Practice

By Marvin Ross and Dr David Laing Dawson

As a medical writer and as someone who works in the daily trenches of serious mental illness in my own family, I find people like Robert Whitaker dangerous. For those who aren’t familiar with him, he is a medical journalist from Boston who is highly critical of the long term use of medication for schizophrenia even though he is neither a scientific researcher nor clinician.

My earlier criticisms of his work appeared in the Huffington Post as Journalists are not medical experts and Leave the schizophrenia diagnosis to the experts please.

One of Whitaker’s key criticisms is that the long term use of antipsychotics in the treatment of schizophrenia makes people worse not better. A group of researchers in New York set out to see if they could replicate what they called his “troubling interpretation” and published their results in a recent issue of the American Journal of Orthopsychiatry.

Their hypothesis was what Whitaker contended that the long term use of antipsychotics resulted in worse outcomes than people who are not treated. They wondered if a systematic appraisal of all the literature would produce the same results as claimed by Whitaker. They looked at 18 studies which included the four that Whitaker used. They pointed out that Whitaker used an additional 6 studies to come to his conclusion but they did not include them because they were review articles that did not report separated data on the exposure groups or were ecological studies which did not report on individual level data.

Of the 18 studies they looked at, only 3 supported the hypothesis that long term treatment with medication causes harm to patients. 8 studies found the opposite and 7 were mixed. These researchers, however, also did not find that long term treatment resulted in greater benefits than harm which is, frankly, not surprising. Some recent studies show that some people with schizophrenia can manage well without long term drug use which Whitaker likes to cite. But there is also no way to predict who can actually achieve that. That is a caveat in all those studies and a fact that Whitaker seems to ignore. (see my post on leave the diagnosis to experts).

Lumping all people with schizophrenia together for a study is bound to have problems since schizophrenia is very likely more than one disease. When Bleuler first coined the term schizophrenia in 1908, he called it the schizophrenias to indicate that it was more like a spectrum than a single entity. Unfortunately, science has not reached the point where the different forms can be identified. An editorial in the January 1, 2016 issue of the American Journal of Psychiatry makes that very point. Current treatment algorithms, it says, do not take into account the substantial interindividual variability in response to antipsychotic drugs.

And, a recent study of first episode patients published in the Journal of Clinical Psychiatry found a greater relapse for those who went off medication after they were stabilized. Decisions to try to reduce doses and to go off are best left to the individual patients working with their psychiatrist. Going off or staying on medication is described by my blogging colleague Dr Dawson who has close to 50 years clinical experience treating patients in a variety of situations. Here is what he has to say:

We doctors over treat at times and under treat at other times. And occasionally we get it just right.

Studies show that family doctors are much more likely to under treat than over treat (pain, depression, arthritis), with specialists erring in the other direction. This is as one would expect, for specialists receive their patients after a family doctor has deemed the case too complex, too resistant to a first line of treatment, or simply beyond her zone of knowledge, skill and comfort.

I have been guilty of both under treating and over treating, probably more often the former. These are type 1 and type 2 errors. If we work to totally eliminate one type of error we will increase the incidence of the other.

We need to be vigilant catching both types of error and correct or ask for help, without letting our egos get in the way.

My patient tells me she is feeling much better now that she has stopped taking those pills I prescribed for her. And at that moment I must allow my feeling of relief and pleasure seeing her look and sound better over-ride this small insult to my ego. Unless I know for sure this is a relapsing illness that will re-emerge within a few weeks, perhaps worse than before.

I also know that it may take a relapse or two or three before we are both sure it is better to suffer the minor discomforts caused by these pharmaceutical agents than the blackness of severe depression, the torture of obsessions, the horrors of psychosis, or the social destruction of mania.

It is really a very small percentage of people who have suffered these severe illnesses who would willingly give up the medication that treats and prevents them. I am usually the one to suggest it may be time for a cautious reduction.

And those that quit them and return to a state of depression, obsession, psychosis, or mania do so for a variety of reasons. Occasionally the side effects were much too severe, or the drug was not helping much. The financial cost too much to bear. The very fact of needing these medications to keep sane can be, for some, an intolerable thought. A manic may remember the ecstasy and not the night in a jail cell, for which he can blame others. Another may find that the drugs he can buy on the street give him, at least temporarily, total relief. Still another may quit simply because there is no one near to remind him, to support him, occasionally to insist. And then a few who prefer to believe their true nature consists of special powers, a supreme intelligence, a grand future, clear reason to be, to be loved by a movie star, to be a hero, to have a unique relationship with God, to have a clear and present or distant antagonist – who prefer to live with this sense of self no matter the earthly consequences – which can always be explained away – than to accept the earth-bound but often meager existence provided by faithfully taking one’s medication.

But most people, when sane, prefer to remain sane, even if it means a dry mouth, a little dizziness upon arising too quickly, blood tests more frequently, a harder time keeping weight under control.

As one patient recently said to me: “Thank God for these big pharmaceutical companies.”

To which I responded, “Not everyone would share that sentiment.”

And he then said, “Why not? Without them you and I would be having this conversation in the asylum.”

From the Twin Towers to Trump – A Canadian View of the US

By Dr David Laing Dawson

There are many Americas, some of them just ideas, dreams, impressions, some of them real people living in a country bounded by Canada, Mexico and two oceans.

We were in Chantilly just north of Paris when the Twin Towers came down. We actually did witness a couple of mid eastern males celebrating as they exited a bar that night. In the morning as we put suitcases back in our rental car our innkeeper offered his sympathies. They are ‘Veeruses’ he said, referring to Islamists. ‘Veeeruses’.

Over the next few days I found myself developing a warm place in my heart for America, the idea of America, and New York, that greatest of cities. As a Canadian I had always felt the usual Canadian ambivalence toward the U S of A, one part envy, one part disdain. But now I was suddenly American, a citizen of the new world, the place where we humans tried once again to create a vibrant, democratic, just society, a place where everybody could have a decent life, and most importantly, a place where tyrants, demigods and would be dictators could never find purchase. How dare these 13th century primitives attack my America?

Of course George Bush then invaded Iraq and I reverted to being Canadian, with less envy now, and more disdain and discouragement.

Twelve years later our news channels, talk shows, social media, magazines, and newspapers are full of Donald Trump, mass killings, the shattered politics of the USA. We see the unrest in American cities after yet another white cop shoots a black kid. We hear unfathomable, stupid opinions about gun ownership, massive armies at the ready, air power, drones, Jesus, angels, illegal immigrants and Muslims. Enormous prisons. The Failure of the mental illness treatment system. Executions. Walls being built. Trillions of debt at all levels of government. Open carry and concealed carry.

From north of the border it seems as if the U S of A has become a throbbing mass of uneducated discontent teetering dangerously close to self destruction.

Yet once again we are traveling in the USA, right at this moment on I 95, moving quickly toward Sebastian Inlet State Park, and once again we have seen this country as vast and rich and busy, organized for efficiency and pleasure. As I leave the gas station store a man enters. He says, “Howya doin’, Buddy?”. The older black man with a worn air force baseball cap and a well groomed white poodle in the parking lot of the highway motel tells me she’s a service dog. “I have PTSD”, he says, “From the Viet Nam war.” His candor is almost too much for my Canadian ears.

The gardens are splendid, the houses grand, and those houses that are not grand are clearly serviced and livable, the stop lights work, there is electricity available all day, drinkable water, abundant food, friendly, helpful people, black and white, selling, buying, playing with their toys, speaking their minds, driving their vehicles on well marked roads to shopping plazas to buy a vast number of products, gadgets, appliances, conveniences often invented by Americans.

Now it is true we drove past a sign on the highway stating that Georgia, to date, had 1331 traffic fatalities this year, and over 30,000 Americans kill themselves or another American with guns each year, and we are not visiting inner city Detroit.

But my point is that this vast, rich, democratic republic deserves better than Donald Trump and the rest of those republican candidates speaking in inferential half sentences and making school boy faces at one another while stoking fears of an imaginary invasion. In psychiatry this is called displacement.

Where are the Eisenhowers and Kennedys?

The world needs a just, stable, sane, thoughtful America. An inclusive America. An America that lives up to its ideals and its people. An America that can lead the world by example, not by threat.

And it needs leaders who are courageous enough to address the real needs and threats and not pander to our primitive instincts. Such real needs and threats as education, health care, income inequality, gun violence, mental illness treatment, CO2 emissions, racial and gender equality – and not some mostly imaginary invasion of illegals and Islamists.