Letter to the Editor: The “seriously mentally ill” are NOT dying 25 years earlier because of failure to seek/receive treatment 10/09/2012Posted by ALT in Mental Health Awareness, Mental Health Research.
Tags: antipsychotic, diabetes, Eli Lilly, iatrogenic illness, NAMI, NASMHPD, polypharmacy, Zyprexa
To: Online Editors, Amarillo Globe-News
Subject: Letter to the Editor concerning article “NAMI observes mental illness awareness week“
To the editor:
I would like to inform you of a factual error in a recent article, “NAMI observes mental illness awareness week.” You published the following statement:
“On average, people living with serious mental illness live 25 years less than the rest of the population. One reason is that less than one-third of adults and less than half of children with a diagnosed illness receive treatment.”
The source of the statistic cited in the first sentence is the NASMHPD [National Association of State Mental Health Program Directors] 2006 report entitled “Morbidity and Mortality in People with Serious Mental Illness.” This report lists multiple causes for increased mortality in the seriously mentally ill population. Suicide is responsible for about 30% of premature deaths, but 60% are attributable to other causes: smoking, obesity/diabetes, alcohol and substance use, infectious diseases, the long-term use of psychotropic medications, and polypharmacy (the concurrent use of multiple psychotropic medications). Note that failure to access treatment for mental health issues is not listed as a causative factor.
The report makes clear that the use of psychotropic medications (especially atypical antipsychotic medications like Risperdal, Zyprexa, Seroquel, etc.) is causally linked to several of the most common causes of premature death amongst this population: cardiovascular disease, obesity and Type II diabetes.
On page 22: “the second generation antipsychotic medications have become more highly associated with weight gain, diabetes, dyslipidemia, insulin resistance and the metabolic syndrome.”
And on page 17: “Psychotropic medications … contribute to symptoms of medical illness and cause metabolic syndrome” and “Polypharmacy [is] identified as a risk factor for sudden death.”
You will find that FDA-approved labels for these drugs (atypical antipsychotics) entered in the Physician’s Desk Reference list cardiovascular disease, diabetes, and weight gain as possible side effects. These adverse events are also very well substantiated both in the scientific literature and legally, through the courts. As one example, Eli Lilly has settled about 30,000 personal injury lawsuits for almost $1.2 billion for failure to adequately inform doctors and the public about the known risk of developing diabetes and obesity when using Zyprexa.
Therefore, your statement that “one reason [for higher mortality rates] is that less than one-third of adults and less than half of children with a diagnosed illness receive treatment” is inconsistent with the source of the statistic it purports to explain. More fundamentally, it is factually incorrect.
Individuals from this population are dying from diseases whose onset was often a “side effect” of the antipsychotic medications they were prescribed, diseases that developed because they received medical treatment.
Please consider publishing a correction at your earliest convenience as an error of this kind is truly a matter of life and death.
Mental health activist and writer
CC: Patty Robertson and Angela Ellis, contacts for NAMI Texas Panhandle
More on that oft-quoted (and mis-quoted!) statistic here:
- “The seriously metnally ill die, on average, 25 years earlier than the general population…” (exploring the source of a statistic)
- SAMHSA’s 10×10 Wellness Campaign — spawned by a statistic, and doomed from the start
Also worth reading (in connection to “Mental Illness Awareness Week”) — David Oaks’ essay “Let’s stop saying mental illness!“
Tags: mental health, mental illness, peer support, spiritual emergence, spiritual emergency
[this is an excerpt from a recently published booklet entitled “Multicultural Competence, Intense Spiritual Experience, and Mental Health: A Self-help, Peer Support and Service Provider Technical Assistance Tool,” written by Lauren Macuso.]
This letter was written by people who have lived through these [intense spiritual] experiences. We were called together for a reason: to create information that will help others through these experiences. Your healing and support has already begun!
What’s going on? What is this? I’m scared and don’t know what to do.
Be aware this is a process. Trust the process. It is a chance to let go of some things you no longer need and to explore and find new parts of yourself. You can make meaning from this experience. Find spiritually sensitive people to talk to.
Find someone safe who will respect your experience. If someone treats you like you are “crazy” or “mentally ill,” seek another person who is willing to be with you. There are people who are experienced in this and who understand this territory. It is important to find someone who will provide acceptance, understanding and reverence for your process. Someone who will not label your process, or stop it or “fix” it, but will hold witness without any agenda other than to hold sacred space and honor your innate wisdom and wholeness.
Even though your experience is powerful and special, be sure to take care of yourself—sleep, eat nutritious food, breathe, use centering practices, walk in nature. Be respectful of your body even if you feel good. Find a place of beauty and serenity to be in.
Find a way to express what is going on with you: painting, journaling, writing poetry, movement/dance/music, etc. Find a way to express yourself that feels authentic to you. Consider finding a culturally appropriate healing model that uses ceremony, ritual, or traditional counseling that feels authentic to you.
Trust your intuition to find the right help if you encounter any dark or negative energies, spirits or fears.
- from Multicultural Competence, Intense Spiritual Experience, and Mental Health, by Lauren Macuso
Is a mental illness like diabetes? 02/21/2012Posted by ALT in Mental Health Awareness, Survivor Voices.
Tags: biopsychiatry, diabetes, medication compliance, mental health, schizohprenia, stigma
Having a mental illness is like having diabetes.
It is the most resounding mantra of mainstream mental health. I probably heard it hundreds of times in the first few months of my employment in the mental health system; investigating the true meaning of this phrase was literally my entryway into critcal thinking about mental health care in our society.
What does it really mean when someone (almost inevitably a professional) says this?
They say it means a reduction of stigma — for if mental illness is like diabetes, it’s nobody’s fault, right? Just a biological fact of life for some folks.
Paradoxically, they say it means there’s something fundamentally flawed and wrong about your brain, your neurochemistry. They say this chemical imbalance can only be corrected with lifelong medication compliance. Adherence to the doctor’s orders gauruntees you a good life (or the best possible under such conditions); non-compliance is a recipe for disaster.
Is this comparison of mental illness to diabetes in any way useful, or is it misleading and inherently stigmatizing?
Let’s let someone who has truly lived this metaphor, experiencing it first hand as a pschiatric survivor, answer the question for us.
The following are excerpts from a brilliant essay published anonymously in 2006 in the Schizophrenia Bulletin. The author, who reports a diagnosis of “schizoaffective disorder,” explains eloquently and succinctly why, for him/her at least…
Having a mental illness is NOT like having diabetes.
The Hospital Experience:
A diabetes patient in hospital can expect a clean, hygienic ward peopled by staff who treat the patient with respect, as an equal, who explain the illness and the treatment regime, and who co-opt the patient as an important agent in his or her own recovery. A psychiatric patient, however, might well find a ward that is rundown and peopled by staff who do not seem to have the same expectations of respect for patients and of a generally good professional working relationship between staff and patients. A psychiatric patient might instead, as I did in one of my hospitalizations, find staff who avoided talking to the patients as far as possible and whose only interaction with patients was to give commands.
The author is not the only one to have observed this trend of the division between staff and “patients” in mental hospitals. See this fascinating study for more.
Schizoaffective disorder rips straight into the heart of the family, causing shame, anger, guilt, and self-blame from parents and siblings, as well as casting blame on the patient. Parents ask, where did I go wrong, and patients ask, if I had had a different upbringing could I have avoided this disease? With diabetes, however, there is no sense of blame, guilt, or shame; rather, people hear the diagnosis, learn (perhaps over time) about the condition, and come to accept the limitations of the condition.
In (naturally occurring) diabetes, there is no place for blame. It doesn’t appear to be a particularly useful or therapeutic concept. I find myself thinking that the same is probably true of mental illness. There’s a firestorm of protest going on over at Mad In America right now about Michael Cornwall’s supposed blaming of families for the mental illness of their children (the article which stirred up so much criticism happens to be one of his best — I highly recommend you check it out).
Ultimately, I think we are best served by abandoning the conecpt of blame altogether. One commenter there put it so well:
I think that the problem of laying the blame on families is better resolved by getting the blame out of the equation rather than getting families out of it. It’s not about who did what to whom; it’s about understanding that we become who we are within the relationships that are important to us, so understanding them is part of understanding who we are. I think it’s when we take those relationships out of the equation that people start to look broken or crazy or mean.
So the first step is to get rid of blame. The next is to understand the significance of the relationships.
Kermit Cole, commenter at Mad In America; emphasis added
And now back to our anonymous author…
Diabetes treatment does not require the same sacrifice of personal privacy that nonmedical treatment for schizoaffective disorder does… Diabetes medicine does not change who a person is; it does not turn one into a zombie, negating the highs as it flattens out the lows; it does not change the way one operates or, in fact, change what it is to be that person. Medicine for schizoaffective disorder does.
Finally, the author suggests an alternative metaphor:
If I could choose a replacement analogy, I would say schizoaffective disorder is like a whirlwind: it comes out of nowhere, strips you naked and sucks you dry, and swiftly vanishes, leaving you empty and shaken but alive, wondering if it really did happen and whether, and how soon, it will come back again.
Tags: anatomy of an epidemic, birth, intense emotional distress, labor, Mad in America, madness, Michael Cornwall, rebirth, robert whitaker
The new* “Mad in America” website/blog/forum has seriously got it going on.
It’s got research. Resources. Recovery stories. Best of all, the “Blogs” section showcases multiple writers, representing a wide spectrum of experiences and credentials… from “providers” and “consumers” to healers, advocates, researchers — and many of these folks sit at the crossroads of these different paths.
What unites them is Robert Whitaker’s literary message (as put forth most recently in Anatomy of an Epidemic): the (mal)practice of institutionalized psychiatry in America, and his more recent efforts to bring the message into the real world, to actively practice a solutions- and positivity-based response to the evils he outlines in his works.
I can really see this site growing into the preeminent online gathering place for alternative thinkers in mental health. Our community needs a home base, a place to process our experiences and articulate the many amazing ideas for reform and recovery we’ve all got cooking in our various noggins.
Look what I found…
I found this true gem buried in the comments section of a Michael Cornwall article entitled “Initiatory Madness” (a stark and moving depiction of his own dealings with madness and abrupt loss of innocence at the age of 20).
[We must understand] the necessity for our waiting on madness to continue its often pain-filled birthing process in the sanctuary of our heartfelt compassion. Our first impulse when a loved one is in intense emotional distress and pain is to give them anything to relieve their hellish pain. It appears grossly irresponsible, if not cruel, to withhold medicine that would quickly numb the emotional suffering of a person in the throes of madness. But what the paradoxical evidence shows, is that if …any young person in their initial experiences of madness is not allowed to go through their purposive madness in the requisite healing crucible of a heart center sanctuary, then a huge majority of us would be stuck, trapped in a laboring process that can go on our whole lives. Birthing is painful but it accomplishes its task of bringing new life forward. But being suspended in the birth canal indefinitely, emotionally numbed out of fear of the raw emotions of transformative, life-renewing madness, is a tragic waste of our birthright.
– Michael Cornwall, PhD; in the comments section of his article “Initiatory Madness“
- the parallel he draws between madness/the emergence of a new, awakened consciousness and labor/the emergence of a new human life
- the fact that both of these experiences, in all their terrible power, are our birthright!
Labor is a (sometimes) painful opening. A birthing woman is truly exposed in a way she may never again be in her life. Emotions raw, body and mind experiencing something fundamentally new and perhaps even frightening, she needs support, comfort, and reassurance to pass through to the other side. But despite the difficulties, remember that labor is a natural process, one for which she is designed by nature. She was made to do this! And it is her right, as a woman, to do it in the way that she sees fit.
Now our modern, institutionalized, corporate medical structures would have us believe that birth is a medical emergency (perhaps even pathological!) requiring numerous invasive techniques and expensive procedures to deliver mother and baby from death’s door.
Cesarean rates in the US are skyrocketing (the national rate rose by 53% between 1996 and 2007), and as a sometimes direct result so is the maternal death rate. No amount of fuzzy math (don’t think they haven’t tried it!)** can hide this alarming trend.
But here’s the thing… women have been giving birth at home, without doctors, for literally thousands of years! And the majority of women around the world are still doing it. And doing just fine. How did we survive so long without these “life-saving” doctors and their “miraculous” procedures?
We don’t need them. We are strong enough to do it with only the support and love of a few who care for us… and be the better for the experience! By coming that close to our spiritual origin and our mortality as well, we are people with a new, heightened knowledge of our humanity. We are people who know a deeper kind of love: visceral, unconditional, of the soul. And by doing it together, we share this experience with our loved ones, we build community, we further cement the bonds of humanity.
Michael is right on… all of the above applies to madness as well. In madness, we are opened to a new, deeper experience of reality. This can be terrifying, and we will probably need some serious support and love to get through it safely.
But we can do it! Without coercion, or unwanted chemical intervention. We wouldn’t have survived for thousands of years on this planet if we couldn’t.
Taking the birth metaphor a little further…
Labor is divided into three stages: opening (first stage), expulsion (second stage), and placental (third stage).
Between the first and second stages is a period called “transition.”
In transition, the woman is fully dilated and the head (usually) of the baby must pass through the opening and into the birth canal. It is widely considered to be the most difficult part of giving birth. Luckily it is also the shortest; usually just 15 minutes or so.
At this point, almost universally, women have a psychological crisis. A mother previously handling birth well may go entirely to pieces. “I can’t do this,” many mothers at this stage of labor have said.
Labor support people (doulas, midwives, etc.) are trained to recognize and perhaps even warn the mother about transition. A mother who feels she can’t go on at this point may need nothing more than some strong encouragement from her supporters to move beyond the crisis.
Unfortunately, the purveyors of birth medications are also trained to recognize transition, and most women who had not planned on a medicated birth accept medication during this period (which is rather unfortunate, as the period is often over before the medication can take effect and the mother is subsequently numbed, unable to follow her body’s cues as her baby descends the birth canal).
Back to madness
I can’t help but think that the well-known crisis of faith in oneself at “transition” has some parallels in the experience of madness. If only professionals were trained to recognize the crisis (which sometimes takes a suicidal bent), and coach the person through it – seeing it as a phase of the process, rather than a medical emergency requiring immediate incapacitation – perhaps more people would be allowed to transition into later stages of their journey.
What Michael is saying is that many psychiatric patients are frozen (by medication) in early stages of their journey, never being allowed to follow their path. They are “laboring” their whole life long, their bodies and minds prohibited from opening, their souls unable to heal. A transition to wellness and rebirth never takes place.
Their birthing processes halted, their strength and resources untested, resolution and rest an impossibility—it is a senseless waste. And, in this consuming culture, I think we’ve all seen enough of senseless waste to last a lifetime.
*Well, it may not be brand, spanking “new”… I have been out of the loop for a couple of months. But I’m happy to report I’ve gotten myself a little part-time office job, so I find myself suddenly blessed with plenty of free time for mental health blogging. Which means: ALT is back in the game!
** In 1998, the CDC reported that the US maternal death rate could be as much as three times higher than the officially reported number (which is bad enough!), because maternal death reporting is a.) not standardized and b.) optional. Every other developed nation has a standardized, mandatory, national system for counting maternal deaths and makes that data available to the public. For example, the UK issues one of these — a comprehensive report containing data on all maternal deaths that occurred during the period spanned by the journal — every 2 years.
Tags: art, Craig Hawkins, isolation, stigma
1 comment so far
Stumbled across this series of paintings by the young artist Craig Hawkins the other day. Beyond the stated themes of the series, I think they speak very well to madness, stigma, and dehumanization.
His description of his work:
A series that seeks to question the way we hide. Dealing with isolation, and compartmentalizing. What feels safe and comfortable may not always be beneficial. We were created with the need for community, and communication beyond ourselves. Struggling to reach out and make the personal something accessible and local requires acts of love and patience. Asking questions is a great way to encounter someone else’s inner dialogue with the hope of understanding. The hope of relationship. It’s seeking the heart not the box.
(from the website of Craig Hawkins)
FREE mental health awareness poster! 03/09/2011Posted by ALT in Mental Health Awareness, Patient Rights and Advocacy.
The other day on Beyond Meds, I posted the Icarus Project’s suicide prevention/awareness poster. I think it’s great. I think there should be more posters like it — posters that speak directly to the so-called mentally ill, instead of bypassing them. Posters without any pharmaceutical funding behind them whatsoever. Posters that speak to balance, wellness, and healing.
I made one this morning:
[click to download full size poster]
Anyone else care to take a crack at it? Submissions are welcome…