At the last annual National Alliance on Mental Illness (NAMI) conference a controversial speaker, Robert Whitaker, was invited to talk about psychiatric drug use in treating serious mental illness (SMI). Mr. Whitaker is not a doctor but has won journalistic awards primarily in the areas of medicine, science, and history. He receives a lot of traction when he advocates treating mental illness without medication and cites studies to back up his claims.
His NAMI lecture focused on dangers of current drug protocols and methodologies that are standard in psychiatric care. Among other disturbing ideas, he cited studies indicating brain shrinkage from long-term psychiatric drug use, and that patients who never start on drug therapies have a better long-term outcome than those on medications. Mr. Whitaker advocates “selective use” of psychiatric drugs, and a reevaluation of drug treatment efficacy for children, claiming a link between drugs used to treat ADHD and a higher rate of pediatric bipolar disorder.
In the audience that day was a twenty-two year old man diagnosed with schizophrenia. That same day, the young man quit his medications. Cold turkey. His mother wrote to journalist Pete Earley, a mental health advocate, author, and father of a son living with schizophrenia, who then posted her email on his blog (http://www.peteearley.com). “Angry Mom,” as she named herself, blames NAMI and Mr. Whitaker if anything happens to her son because she knows how sick her son is and that nothing good happens when he’s off his meds. There will be “blood on their hands,” she says.
Hearing Mr. Whitaker question drug therapy makes most of us who have a loved one living with a serious mental illness (SMI) cringe. I mean a full-body Cringe. Not because we love drug companies or are close-minded. In fact, much of what he says makes a certain amount of sense and could be helpful toward treating SMI patients in the future. But saying it out loud is lethally dangerous.
I’m guessing Mr. Whitaker doesn’t live with a person diagnosed with SMI. If he did, he’d know patients living with bipolar, schizophrenia, and schizoaffective disorder typically have concrete or rigid thinking, a symptom of which is the constant obsessing over an idea, and an inability to think abstractly or fluidly. So, when a twenty-two year old man with a schizophrenic brain heard “drugs have serious side-effects” and “patients do better without…” that is all he heard, not the more nuanced message that included, according to Mr. Whitaker’s response to “Angry Mother,” that, ”[Drugs] could be used to help some patients recover from an initial episode, and they could be continually prescribed to those patients who can’t seem to do well off them.”
“Angry Mom” knows a lot about her son’s condition and if she says he needs medication, I’d believe her. Nothing like a stranger coming in and introducing an idea that undoes all the work she’s put into getting him to stay on meds, and not just to be functional, but alive.
One parent /contributor to Behind The Wall: The True Story of Mental Illness as Told by Parents claims she will never again question her son’s doctors about his meds in his presence. By merely asking his doctor, “Can’t he get off some of these?” her son, not seeing that she was exploring the idea, went off all of them, cold turkey. Weeks later, he became psychotic, landed in jail, and often couldn’t recognize her. She blames herself for questioning the drug cocktail in front of him. Another contributor put it this way: the drugs are awful and why wouldn’t a person want any chance to go off of them?
No one can dispute that side effects of psychiatric drugs are horrible: excessive weight gain, tremors, loss of appetite. One contributor to Behind The Wall said her son went (temporarily) blind from one drug. Another put him at risk for a heart attack. Another drug doctors continually recommend could kill him. It often takes several weeks to get a drug cocktail correct, then that too can change. But there’s a trade off. Catherine’s son, Philip, was diagnosed with schizoaffective disorder. But Philip’s father didn’t support drug treatment and his psychosis persisted on less effective medication. Eventually, while alone, and not monitored to ensure he took his medications, Philip committed suicide at age nineteen. Drug therapy would have prevented these devastating outcomes.
Mr. Whitaker’s drug-reduction advocacy is not meant to harm. Any parent would insist on reducing the drug load for their child living with SMI if they could stay well without them. And we won’t discuss medicating pediatrics here, except to say, it’s never an easy decision.
But some of Mr. Whitaker’s claims ignore other studies that provide at least partial explanation, for example, as to why recovery rates for SMI are reportedly higher in some third world countries. Countering his suggestion that the cause for lower recovery rates is because of over prescribing, we can look Tanya Marie Luhrmann’s essay, Beyond the Brain, from last year’s The Wilson Quarterly* cited in our post, “Society’s Way or Best Way,” regarding societal structure and community impact on MI.** Stress and isolation play a big part. Mr. Whitaker also cites a study showing mentally ill patients who are not on drug therapies do better in the long run. There are many SMI patients who, without medication put themselves in grave danger. If a patient isn’t so psychotic or manic that they can stay safe without medication, then yes, one can see they will be the ones who do better in the long run. That is NOT the kind of patient Mr. Whitaker means to be speaking about.
But that’s not what that twenty-two year old heard.
Mr. Whitaker’s focus is on shifting drug protocols, and uses science to back it up. But even he admits that the current health system (and our society) is not structured for long-term minimal drug therapies. In his response to Angry Mother, Mr. Whitaker seems to acknowledge risks in his advocacy when he says, “We, as a society, have not developed a system of care that provides support to someone who might want to taper from his medications, and help that person try to do so in a safe manner, even though we know that it can lead to a good outcome for many. And the absence of such support may put a person—such as this mother’s adult son—into a perilous place when they do, in fact, learn of such information.”
If our society could develop deeper compassion for people living with brain illnesses, reduce stress caused by our societal structure, and put our loved ones who live with SMI in a safe environment for a year or two— time for their brain to cool, maybe we could begin to have this ideal treatment methodology Mr. Whitaker proposes. Mr. Whitaker offers a hope for a tolerable treatment for SMI that we, a supposedly humane society should strive to realize. What Mr. Whitaker never offers, is an apology. Because he’s giving out an idea that many SMI patients simply cannot have. At least not now.
But that is not what that twenty-two year old heard.
Research and evolving brain studies do offer hope for non-drug and selective drug therapies for SMI. And a broad range of seemingly worthy studies identifies the multiplicity of factors contributing to SMI and to recovery— factors that are varied, complicated, and unique to each individual. No one’s mental illness is like the other, nor is their recovery. And for parents trying to keep their adult child living with SMI healthy and alive, they want to stay with what’s working.
Complicated, varied, and irrational. That’s what mental illness is. Maybe we cringe because it all sounds too good to be true. No drugs? Please don’t tease us, Mr. Whitaker. Don’t even tell us until hope really is here.
* Tanya Marie Luhrmann’s essay, Beyond the Brain, from last year’s The Wilson Quarterly: http://www.wilsonquarterly.com/article.cfm?aid=2196#.UOR7b8OB6j0
NAMI provides information and resources about treatment for mental illness: http://www.nami.org/template.cfm?section=About_Treatments_and_Supports
For further information about Robert Whitaker: http://www.robertwhitaker.org/robertwhitaker.org/Home.html
Huffington Post blog by Robert Whitaker that clarifies his perspective: http://www.huffingtonpost.com/robert-whitaker/anatomy-of-an-epidemic-co_b_555572.html
As always, we are interested in your thoughts.
Or, When It’s Good To Break The Rules.
“In other cultures, children live with their parents into adulthood. I don’t understand this push to get them out of the house. Families should be together.”
This is what Catherine said only months after her son, Philip, had died. He had been diagnosed with a serious mental illness. He had gone off his medication, became psychotic, and had lain on a railroad track.
I can still feel the pain in her voice as my sister and I sat in the darkening room listening to her story, surrounded by pictures of him that had been on display since his funeral.
His father and others who didn’t fully understand his illness had, against her wishes, encouraged Philip to move away from her and live in a group house. They said he needed to become more independent. Catherine knew Philip wasn’t capable of many things, including living on his own. From his first break, Catherine had been Philip’s primary advocate and caregiver, made every medical decision, health insurance arrangement, and compiled mental notes about his changing behaviors for his doctors. While living with her, Philip was capable of few things but she encouraged him to attend therapies and workshops that seemed helpful for him and had him on a schedule of things to do each day. That, she felt, was important to his healing. She even adopted two kittens to keep him company during the day when she had to be away for work. But she had little support in caring for him.
At the time of Philip’s death, his housemates were away for the holidays, he wasn’t being monitored and he was very, very ill.
I think about Catherine often. She is a kind and giving person who did everything she could for her son. But she was often doing it alone, and now grieves alone. I think about Catherine when I read or hear about a parent who struggles alone, without support or understanding from a spouse or other family members. Because people living with mental illness do much better when they are well supported by loved ones. The single parents we interviewed told us they had to find ways to cope, and they are exhausted. Often their new partners (who are not the biological parents of their children) have trouble understanding what to do when a person is in a mental health crisis and that scene can get ugly. Parents who are supported by their spouse expressed that they couldn’t fathom how a single parent could care for a child with a mental illness without the other parent stepping in. Because a crisis is unpredictable, all-encompassing and sometimes downright frightening.
Support doesn’t come just from immediate family. It’s a community at large that can make a difference for a person who lives with mental illness. This is why the movement lead by BringChange2Mind and other groups to talk about mental illness is so important.
In her article, Beyond the Brain from last summer’s The Wilson Quarterly, (http://www.wilsonquarterly.com/article.cfm?aid=2196#.UOR7b8OB6j0) Tanya Marie Luhrmann argues that strong community can be the difference between functioning and not for a person living with mental illness. Given that higher stress can trigger mental illness for individuals who have a proclivity for it, she cites research on immigrants and suggests a correlation between weak community for the new arrivals and higher rates of schizophrenia. Luhrmann makes a good case for the efficacy of treatment when family and a tight-knit community surround an ill person.
What Luhrmann talks about regarding community and family and advocating for a loved one with mental illness is what we learned from the parents we interviewed. Successful outcomes seemed more likely for those who were supported by advocates who are supported also. There are times a family must send a loved one away to a qualified treatment facility—for addictions or other mental health issues—but here too, the best facilities create an atmosphere of belonging and inclusion in some manner. It should make sense to anyone that the healing needed by a person in crisis can more likely begin by being embraced rather than rejected into the margins.
Catherine’s dismay that Western society boots a young adult out the door was justified. In her gut she knew her son needed his loved ones—his mother, sometimes his sibling and their circle of friends— around him because he was very ill. Dan and Rebecca also knew their adult daughter needed to lounge around their house for the year after she was released from hospital treatment for depression. Sometimes, for the love of family, one has to break society’s rules. Or make the rules bend toward compassion.
*Blogger’s note: After publishing this post, we heard from one of our contributors who clarified that it is not always in the best interest of the family for a mentally ill person to live at home. When a person with mental illness is unstable or has erratic behaviors, it creates a chaotic and unproductive environment for the family where often the parents devote all their energy to the ill person and neglect other familial relationships. Depending on the phase of recovery, a person with mental illness may do best within a structured treatment facility or a group residence.
Our intended message for this post was that our parent/ contributors have found it is best to make decisions regarding living arrangements and treatments that are in the best interest of the ill person, not what society dictates is the way adults should live. The well-being of loved ones is critical as these individuals are usually the best support a mentally ill person has in his corner.
Thank you to our reader for prompting a clarification. We always welcome comments.