Tuesday, December 17, 2013

Living with a Serious Mental Illness
Randye Kaye, the author of "Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope", talks about her family's struggle to help their son recover from a serious mental illness.

Here are some tips to accommodate our loved ones this season...

Surviving the Holidays When You Have a Mental Illness

For most people, the holidays are a time of joy and celebration. However, for many people with mental illnesses, the yuletide cheer is accompanied by added challenges. This is true for those with various diagnoses. Consider the following:

1. For people with depression, the joy and festivities of the holiday season seem to amplify their own inability to experience pleasure. As families and friends come together, they may withdraw. To make matters worse, Christmas falls right around the shortest day of the year, so the lack of sunlight can be a huge trigger for those with Seasonal Affective Disorder (SAD) – a type of depression which occurs in the fall and winter months.

2. For people with anxiety, being around large groups of unfamiliar people can be terrifying. Christmas parties, crowded shopping malls, even visits with unfamiliar (or unkind) relatives can be extra-stressful.

3. For people with anorexia nervosa or bulimia nervosa, the large amounts of foods, particularly “treats,” that are part and parcel of holiday events can induce major anxiety. So can the enormously triggering “diet talk” that often accompanies holiday feasts and intensifies near New Years.

4. For people with alcoholism, the endless parade of holiday parties and events where alcohol is present makes it difficult to socialize normally or enjoy the typical gatherings with family and friends.

5. For people with ADHD, there is the added stress of final exams, Christmas shopping, decorating, parties, and visiting relatives, which can make them feel more scattered and disorganized than usual.
So how do you cope with mental illness during the holiday season?

Here are some tips which may be helpful, regardless of your particular diagnosis:
1.) Plan ahead. Create a written list of potential problems that could arise around the holidays. Think about various ways that you could handle these situations, and write down your solutions. Visualize yourself handling these difficult situations with grace and strength.

2.) Enlist social support. Talk to people you trust – your therapist, family members, or friends – about your concerns. Let them know how they can help you through this difficult time. People are more than willing to be more generous and charitable than usual at this time of year!

3.) Maintain good health habits. Get at least 8 hours of sleep per night, eat plenty of healthful foods, exercise regularly, and drink in moderation (if at all). Many people stop engaging in health-promoting behaviors around the holidays. If you struggle with a mental illness, this is the time to be extra-conscientious about caring for your physical and mental health.

4.) Focus on the protective factors associated with Christmas. Despite the myth that rates of suicides increase around the holidays, scientific research actually shows that suicide rates are lower than average in the days before Christmas. This may be due to several issues:
• Increased support from family and friends, who tend to gather together around the holidays
• Increased sense of charity and goodwill from others
• More community support – shelters, food banks, charities for the poor
• For many people, Christmas is associated with positive memories of hope and love and family, which can help improve outlook when things seem bleak
• Increase in religious observance and spirituality associated with Christmas

5.) Lower your expectations. Yes, the holidays are seen by many as “the most wonderful time of the year,” as the song goes. But stress and personal problems do not magically disappear during the holidays. It is not realistic to assume that you will be symptom-free simply because it is a holiday.
6.) Keep it simple. The holidays have become so commercialized, and so many demands are placed on people to throw and attend parties, buy and wrap lavish gifts, and cook like Julia Child on steroids, that many people are simply burnt out by the time Christmas arrives. Retailers love to extend the holiday season from Thanksgiving through New Years, but this is mostly for their own profit, and it doesn’t have to be this way. If you feel overwhelmed by stress, simply have a quiet, one-evening celebration with a few people of your choosing who are closest to you. There is no need to spend precious time and money getting people the perfect gifts. A simple card with a thoughtful note is sufficient to let people know you are thinking of them.

7.) Focus on what really matters. Remember the people of Whoville in The Grinch Who Stole Christmas? They showed us that Christmas can be joyful without presents and trees and decorations. These material things have no bearing on our ability to enjoy the holidays.

8.) In keeping with the Dr. Seuss example, think of your mental illness as the Grinch. It is a cold-hearted thief, with a heart three sizes too small, who will attempt to ruin your holiday. Don’t let it.

9.) Remember that parties are supposed to be fun and ARE ALWAYS OPTIONAL. You always dread your annual office party? Just don’t go. Let whomever is in charge know that you aren’t feeling well, or simply that you appreciate the invitation but you won’t be able to make it this year. It’s supposed to be a party, not a punishment.

10.) Do what’s fun; skip what’s not. If you love preparing Christmas dinner for your family, great! Enjoy! If not, hit up your local Chinese restaurant. Jews have had this tradition for decades.

Mental Health Patients Can Receive Welcome Christmas Gifts From You

The patients at Toronto’s Centre For Addiction and Mental Health (CAMH) say the only gift they are likely to receive this Christmas is from Gifts of Light. The program, which is now offered 365 days a year to honour other celebratory days and cultural and religious holidays, lets those who struggle with mental illness and addiction know that people care.
There are a variety of price points from which to choose on the web site.  For $10, one can give a gift of underwear and socks. For $20, patients can receive a gift certificate for the patient-run Out of This World CafĂ©, located on the Queen Street campus, or get a visit from a dog to lift their spirits.
For $35, one can choose to give a hat, scarf and mittens set or for $45 a pair of pajamas and slippers.
 There are many options. Diane, an outpatient at CAMH’s Archway Clinic for people with Schizophrenia, has been receiving treatment for the past six years. “Before coming to Archway I had no self esteem and no self confidence,” she told a roomful of people invited to CAMH for the Gifts of Light 2013 launch.  “Now, thanks to Archway, I have both.” She added that Archway gives her a sense of belonging and “for a lot of clients, including myself, Archway is the only family that we have.” Last Christmas, her Gifts of Light present included a winter hat, matching gloves, a scarf, as well as shampoo, conditioner and antiperspirant.

“The Gifts of Light to Archway has made it possible for many of us to truly have a merry Christmas,” she said. “The Gifts of Light provides comfort by delivering gifts and hope to those who are greatly in need. To many of us, it is the Santa Claus that goes that extra mile.”
CAMH helps 28,000 people annually through its inpatient and outpatient programs and through Canada’s only 24/7 mental health emergency department.

Over the past five years, nearly $1.3 million has been raised for Gifts of Light; 628 calling cards were distributed to patients to connect them with friends and family; and 3,645 each of soap, shampoo and conditioner were given out, according to information in the 2013/14 Gifts of Light gift guide. Those are some examples.

“It made me feel warm and happy inside, knowing that there are people like yourselves who actually care,” Diane said. “All of my friends felt the same way. We all shared the same excitement in receiving such a gift. For many of us, this was our only Christmas gift. We’re all grateful to the Gifts of light for giving a ray of hope to those of us who otherwise feel downhearted at Christmas time.”

Wednesday, December 11, 2013

Medicate Me, Even When I Refuse

Suppose your toddler wanted to play with your kitchen knives. They are bright and shiny, and she sees you use them everyday, so she asks for them. "No," you kindly but firmly say. "They are very sharp and would hurt you." Your toddler begins to whine, then yell, then tantrum when you refuse to let her play with those knives. Do you give in, when you see how much it means to her, how upset she is that you authoritatively refuse to grant her permission? No, you are a good parent, and because you are responsible for her safety, you calm her down and redirect her to things with which she is allowed to play. The tears dry, and her smile returns -- and she is safe.

Had she been permitted to have her way and play with the sharp knives, she would have badly cut herself. She didn't understand this; she was unaware of the danger she would have been to herself. She needed someone outside herself to keep her safe, until she was older and could understand the damage a knife can cause.

Such a scenario is reminiscent of anosognosia: the inability to recognize one's own illness, often while persisting in behaviours that are harmful to oneself. While it can also occur to due neurological disorder, it is very prevalent in psychiatric illnesses such as schizophrenia. Many people experiencing psychosis do not believe they are at all ill. They refuse help, and, unless treated against their (psychotic) will, they may harm themselves or others.

But we must have the right to harm ourselves, have we not? Such reasoning parades as a constitutional right, the right to chose what happens to our bodies and brains. Move beyond that and find that the right to refuse psychiatric treatment is a growing movement. This group insists that any treatment for a mental illness is exceedingly harmful to the person -- if indeed there is such a thing as mental illness. "Mental illness," they say, is a "personal journey," something special that must not be crushed by involuntary medication or hospitalization.

Perhaps this laissez-faire is akin to letting the child play with the knives. Yes, they might get hurt, but, as they "journey" with these knives, they would discover that to hold the hilt means no pain. Some children would learn this quickly, others more slowly and with far more cuts. In other words, if someone knew that some would come out of the play wiser, and maybe even with hardly a scrape, to play with knives is indeed a learning experience. Thus, the one that is "in control" (parent) ought not disallow the play lest they dampen the curiosity, problem-solving skills, and bravery of the child, who has their own fledgling right to harm him or herself. Perhaps. But those "learning" cuts could easily kill.

Is this then a real right? In my case, is repeatedly bashing my head against a concrete wall till both my head and the wall are bloody a right? Or cuts to my arms, slit with a razor blade -- a right? It is what I do without medication; it happens when I am ill with schizophrenia in order to release the millions of microscopic rats that I delusionally believe are eating my brain. When taking antipsychotics, the rats leave, the need to self-harm fades, and I am in my right mind.

Besides the rats and bloodletting, I fall into the realm of anosognosia when I am ill. I do not know that the rats are not real, and vehemently argue with frustrated health care professionals. I do not belong, certified, on the psych ward! The rats really are eating my brain! No, I don't want your PRNs of rat-infested Ativan!

Then come the restraints and injections.
Involuntary treatment. Anosognosia: no insight, no right?
The Mental Health Act hangs on the ward wall. Our rights. I am too drugged to read it.
I attempt to hang myself in the bathroom. Again.
The "psychiatric survivors" will love this. See the results of "treatment"? I have rights: the right to life, that right to the pursuit of happiness. Surely this cannot happen amid needles and isolation rooms and medication -- oh, how much medication.

But though some psychiatrists rely overly on their psychopharmaceutical powers, my brain is in fact too sick to heal on its own. It needs something outside itself to be healthy enough to fulfil my rights. I have seen drugs fail, but I know now that some actually clear my life of psychosis. Could I have gotten there alone? No. The hangings would have continued, eventually successful. Unmedicated "journeys" for me are a hell of hallucinations, paranoia, and delusion. Please, I do want the drugs, even though I tantrum against the injections. Please, someone, make choices for me when I cannot: choose to give me the treatment that, for me, has worked in the past. Medicate me. Don't leave me to myself; I will play with those knives, and may not learn until I bleed to death what harm I have the "right" to do.
 -Erin Hawkes, Blogger
How Medication Stopped My Schizophrenia From Killing Me

Have my antipsychotics literally changed my brain? Have they exacerbated my schizophrenia?
An irony: an effect of antipsychotics is that less dopamine (a neurotransmitter whose work is affected in schizophrenia) is sent as a message to the next neuron, but in fact, this may actually cause a "supersensitivity" to dopamine. In "The Scientific Case Against Forced Drug Treatment" presented by Robert Whitaker in February, Whitaker runs with this, blaming antipsychotics for causing psychosis.

There is some evidence of dopaminergic supersensitivity in medicated patients but, again ironically, it is time-limited and seen most in the patients with schizophrenia that have the best prognosis. Perhaps that is occurring in my own medicated brain. Would Whitaker recommend (strongly) that I stop taking the medication?
However, when my brain is unmedicated, my schizophrenia runs rampant. I am psychotic, hallucinating, and awash in paranoid delusion. I do not go to work, I do not answer my phone; I flee to the streets lest the police come to my home and collect me for yet another hospitalization. I live in constant terror because microscopic rats are eating my brain and a homicidal man is tracking me down to shoot me. I am not on medication. That is my right. But have I chosen to be med-free of my own volition?

How do you choose for or against psychosis when psychotic? By very definition, you are of "unsound mind" when making that choice, the criteria accepted by most mental health care professionals (along with being a danger to yourself or others) as the green light to provide medication without your consent.

Personally, I have been on the receiving end of forced medication. Throughout my 11 certifications (forced hospitalizations), I was repeatedly injected with drugs without consent. More specifically, against my consent, I was screaming and crying for them to not inject me. I never won. But now, I take medication for my schizophrenia voluntarily every day. Why? I learned from those forced injections that meds made things easier: voices are quieter, delusions and paranoia smaller.
I would never have consented on my own, preferring to exercise a "right to be unmedicated" over a "right to life-saving treatment." While I do not believe that every forced intervention was warranted, I do believe that without some involuntary treatment I would be at best psychotic and, at worst, dead. Oh, did my voices ever want me to kill myself. I count myself lucky that some medication ordered by some doctor brought me out of that state.
Now, is life without schizophrenia and without medication a possibility? I know from experience that every relapse followed a decrease (or cessation) of my meds. Round and round that revolving door. Isn't that the definition of "insanity:" to repeat a behavior expecting a different response? I kept stopping the medication, only to wind up on the hospital psych ward again. Finally, I understood: take meds and stay sane and free.

Or am I a deluded victim of the "drug era" I am in?
Robert Whitaker's presentation ("The Scientific Case Against Forced Treatment") to the Mental Health Legal Advisors Committee, astonished me at the absurd simplification regarding that "pre-drug and drug era" (1947 and 1967): who can enumerate the countless other factors between these two "eras"? What about the start of an "era" of having more and differing social facilities to support those with mental health become not only available, but also coming with progressively less stigma.
Across Whitaker's "eras," successful "living in the community" has a multitude of possible interpretations (which he fails to note). This includes how long people with schizophrenia live at home as (mentally ill) adults versus in some form of "group home" or supported housing.

In our society decades ago, and across a variety of cultures, many people with mental illness would have been more often cared for among relatives. There are vast differences regarding mental illness acceptance and support across both time and space; differing world-views and beliefs systems must be taken into account when defining such things as "living in the community."

Finally, where in his presentation does Whitaker acknowledge that those most likely to be medicated are those most adversely affected by a psychotic disorder such as schizophrenia? And that this population will show less improvement, regardless of whether they are being medicated. I count myself fortunate in that I do respond to the antipsychotics I am now taking, despite being labeled "severe," "refractory," and "chronic" in the past. It would be great if I could go without meds, but I have learned all too painfully that I get my life back when I am taking those little pills.
Why Mental Illness Goes Much Further
Than Research Tells Us

Canadians recently learned the results of the Canadian Community Health Survey on Mental Health (2012), which revealed that 1 in 6 Canadians were in need of mental heath care. This is a large portion of the population and so the findings are not only significant, but they have garnered media attention and should assist in advocacy for mental health issues in Canada.
The problem is that the statistic is flawed.
The researchers excluded three critical groups:
1. "persons living on reserves and other Aboriginal settlements"
2. "full time members of the Canadian Forces"
3. "institutionalized populations"
The problem here is obvious -- the exclusion of these populations significantly lowers the number of people identified as having a mental health need. Native Canadians are known to suffer from problems with substance abuse, depression and high suicide rates, and the Canadian Armed Forces tend to have higher rates of PTSD and depression than the general population.
Furthermore, the researchers only assessed a small portion of mental illnesses -- depression, bipolar, generalized anxiety, and substance abuse/ dependence. Using a reduced number of disorders in the calculation and understanding of need biases the results.
So, the 1 in 6 figure significantly underestimates the mental health needs of Canadians.
There were other methodologcal issues that are also worth mentioning here, but my goal is not to tear down the methodological flaws of the research. Rather, I believe there is a larger and more important message to be delivered by examining the mental health statistics disseminated in Canada. Before making my broader point, let's look at a more popular mental health statistic that many readers would be familiar with.
Many Canadians have heard over the years that 1 in 5 Canadians will suffer from a mental illness in their lifetime. They were exposed to this statistic through the Bell Canada "Let's Talk" campaign or through the various health agencies in Canada, such as the Public Health Agency of Canada, the Canadian Mental Health Association (CMHA), and the Canadian Institute of Health Research.
These groups' websites are not the best at clearly citing their sources, but with a little bit research, one finds that the statistic usually comes from one of two reports:
1. The Report on Mental Illness in Canada by the Public Health Agency of Canada.
2. The Canadian Community Health Survey on Mental Health and Well-Being (2003).
The first report summarizes existing data and was used to paint a picture of mental illness in Canada.
The odd thing about this report is its clear problem with internal consistency.
The authors of the report assert on page 15 that 20% (1 in 5) of Canadians will experience a mental illness in their lifetime. Two pages later (p. 17) they write that "Canadian studies have estimated that nearly one in five Canadian adults will experience a mental illness during a one year period (my italics)." This appears to be a baffling mistake that confuses the reader about which statistic is correct.
The second report presents the findings of a national survey. Both one year and lifetime prevalence of various mental illnesses are presented. Results from this study found that 1 in 10 Canadians had at least one mental illness over a one year period, and 1 in 5 experienced one of these disorders in their lifetime.
These data are a significant improvement over the The Report on Mental Illness in Canada, which derived their data from smaller Canadian studies.
However, the problem with the CCHS survey is that only a portion of mental illnesses were examined. The researchers did not assess the prevalence of many disorders. To give an idea of the degree to which this exclusion of illnesses would bias the prevalence results, I have listed here the illnesses not included in the survey and the lifetime prevalence of each disorder based on U.S. estimates (1):
- Specific Phobia (12.5 per cent)
- Generalized Anxiety Disorder (5.7 per cent)
- PTSD (6.8 per cent)
- OCD (1.6 per cent)
- Dysthymia (2.5 per cent)
- ADHD (8.1 per cent)
- Oppositional Defiant Disorder (8.5 per cent)
- Conduct Disorder (9.5 per cent)
- Intermittent Explosive Disorder (5.2 per cent )
- Schizophrenia (one per cent)
- Personality Disorders (14.8 per cent)
As you can see, there were a large number of disorders not included in this Canadian survey. However, this is not the only problem. Similar to the more recent CCHS survey, the following groups were omitted from the study:
- those living in the three Canadian territories and resident of remote areas
- those living on Indian Reserves and Crown lands
- residents of institutions, and
- full-time members of the Canadian Armed Forces
When one considers that these groups were not included, in addition to the large swath of mental illnesses that were not evaluated, it becomes very clear that 1 in 5 Canadians is not even close.
Large scale American studies on prevalence of mental illness have found that 1 in 2 Americans will experience a mental illness in their lifetime.
While I certainly applaud these various health organizations for their efforts and hard work, I am quite dissatisfied with not only the biased statistics that have been formulated and disseminated, but also how no one has even noticed.
To help put into perspective the injustice of this problem, one only needs to surmise the reaction of politicians, health officials, advocates and indeed the general population if this same approach was used with a physical health problem like cancer.
Imagine if the true prevalence of cancer in Canada was somewhere around 50 per cent, but the government of Canada estimated the prevalence to be approximately 20 per cent because they included in their estimate only a portion of all possible cancers. The medical community would be in an uproar because there are important implications drawn from such data.
Health awareness in the community and funding for research and treatment are all affected by the estimated severity of a problem. And if you vastly underestimated cancer rates, the realistic danger is that cancer research and treatment would not receive the necessary attention and funding that it deserves, and the community at large would suffer. Thus, it is important to always have an accurate understanding of the severity of a particular health problem.
Well, guess what happens if mental illness is underestimated?
It is often said that mental health is the orphan of the Canadian health care system. Sadly, the lack of awareness in just how prevalent mental illness is in Canada only serves to further validate this conclusion.