This is the question my sister, Elin Widdifield, and I ask one another as we prepare to talk about the important stories in our Behind the Wall collection. We don’t present the same talk or readings at every venue because there are so many different facets of parenting and advocating for a loved one who lives with serious mental illness. What we talk about with mental health care professionals is different than what parents of children recently diagnosed can benefit from; then there’s a slightly different conversation when speaking to a broader audience. This subject matter is really important to us, so we have plenty we want to talk about.
As we prepared for the parent interviews that became the stories in our collection, we knew through personal experiences what areas of this parenting journey we wanted to explore. At the top of the list were questions concerning parents’ experience of grief and of course, coping. Other themes consistently bubbled to the surface throughout the course of interviewing including, and unexpectedly, thoughts about how to talk about mental illness.
Though our great-uncle, Dr. Lawrence Collins, was a well-known psychiatrist many years ago, the rest of the family of lay people didn’t have a language to discuss my grandfather’s illness (nor was the illness specifically identified) that caused chaos for his young wife (our grandmother). As he developed a pattern of missed work, his wife hid his illness, covered for him, and endured privately; his children rarely entertained friends at home. They would say he was “sick again” and everyone knew to keep a distance. It is a blessing they all possessed a wicked sense of humor and despite the chaos, recognized my grandfather’s positive qualities as distinct from the sickness.
We now understand alcoholism is an illness; treatment is available and celebrities talk openly about living sober. Yet talking about mental illness hasn’t quite caught up and widespread misunderstanding prevails. In my grandfather’s day, a cancer diagnosis wasn’t talked about outside the family either because, until cure rate statistics rose to foster hope, it signified doom. The stigma around mental illness is largely a result of the odd and frightening behaviors a person exhibits when the illness is untreated. There’s also a small, yet significant factor feeding stigma, one that is similar to how cancer was once viewed; it is a sense of hopelessness associated with the diagnosis. Sadly, what many don’t understand is that a person who is diagnosed with serious mental illness today can reach recovery with early detection and evidence based treatment. Many of us endeavor to address this misunderstanding through more accurate language.
There is an ongoing broader discussion about media and society’s penchant for exploitative and sensational language. I depart from that discussion here to focus on the manner we, as advocates, family members of those diagnosed, and individuals managing their illness use—or fail to use— clear language when talking about brain disorders. Through our interviews with parents, Elin and I saw that the way parents talked about mental illness, specifically and generally, matters a great deal. The way we use language, or lack thereof, reinforces stigma and the walls of isolation.
… managing one’s own mental illness, or supporting another in that challenge, is the most brave and compassionate existence I’ve ever witnessed. It’s a battle fought day in and day out.
Managing any chronic illness is a challenge and support for caregivers is as critical as support for the ill person. Stigma drives people away from providing this support to the supporters. Of a person with mental illness, we’ve heard it been said, “He’s off” or, “She’s a mess” and even worse, “He’s crazy!” In contrast, think about the language of cancer: “He’s fighting bravely.” “She fought a heroic battle with cancer.” Without discounting the bravery attributed to fighting any painful mortal illness, I assert that managing one’s own mental illness, or supporting another in that challenge, is the most brave and compassionate existence I’ve ever witnessed. It’s a battle fought day in and day out.
Elin echoes many other parents we interviewed when she states that mustering courage to be able to say her son’s diagnosis aloud was a milestone and marked a step toward acceptance and subsequent recovery. Verbalizing truth is key to acceptance. One Behind the Wall mother, Tessa, tells us when she accepted his illness, “his whole world got better.” One’s life improves because acknowledgment leads to effective treatment and importantly, the individual’s own acceptance. A person can only manage his illness once it has been accepted without judgment. Elin and I were quite alarmed that several parents we interviewed revealed that other family members, or worse, even the child’s other parent, were in denial about the diagnosis despite very clear symptoms. A subtext of conflict or judgment about the diagnosis among loved ones hinders a person’s chances for recovery.
Talking openly about mental illness is difficult at first. Elin and I found that once we started talking, others came forward gratefully to share their experience. Bianca, a Behind the Wall mother whose son lives with schizophrenia grew tired of skirting the issue. Now she just tells people. “My son has schizophrenia,” she says. “You know, You guys deal with it!” Because Bianca understands that she can’t control how others judge her son but speaking honestly about her experience and his illness is liberating, particularly when there are many more important issues about the illness to address on a day to day basis, like, “How is my son feeling today?”
Even ignoring the stigma, the parent/advocate role is sometimes grueling. A marathon. Communicating a need for help is no different than any other life challenge. Asking for help is an act of bravery, it’s practical and self-preserving.
Language and communication tools are much better than what my grandmother could access. When her husband drank, he was unavailable. The behaviors he exhibited that we now surmise as his mental illness were just “moods”. Sixty years later, when my nephew was diagnosed and at each juncture of his illness, my sister and her husband sent emails to extended family. Yes, that’s right. They talked openly about it. They spelled it out in vivid detail in email distributed to the whole family. Their emails carefully and factually conveyed a clear message: this is happening, please support us, and here are phone numbers and addresses. More recently, the emails speak about incredible progress.
It has been my experience that people really do want to help others in crisis. But, as one Behind the Wall mother reminds us, not all people understand mental illness; while that’s good for them that they have not had to experience the illness, the misunderstanding isolates a family just when community support is needed most. When one Behind the Wall mother, Rebecca, hospitalized her daughter, she didn’t want everyone to know every detail or have to talk about her experience to every person she encountered. But she did want support in the form of being with friends in a setting that was not all about her daughter’s illness. Like my sister, she used email to update friends about Stella’s, progress. She’d say, “I don’t want to talk about Stella’s progress at dinner tonight or church group tomorrow, but here’s what’s going on so you all know…” This way, she framed the type of support she needed, which for her was friendship and normalcy. Getting it all out in the open, limiting speculation and clarifying her own wishes, made it easier for Rebecca.
The journey supporting her son has been long for Tessa. Her son, now in his thirties has a dual diagnoses of substance use and schizoaffective disorder. Tessa is honest and uses humor to manage and cope. Sometimes, during conversations, he’ll even tell her, “I don’t know what I think about that because I’m crazy.” And when he’s not taking his medication or caring for himself properly, she says, “You’re crazy!’” Her friends tell her she shouldn’t say that to her son. But she tells them she’s treating him like a normal person. She purposely uses the same language flung carelessly about by others to create normalcy. She’s also expressing her defiance and challenging the language of stigma. She is declaring her commitment to a fearless, indefatigable, daily fight against mental illness.
Comments are always welcome:
by Elin Widdifield
Last week in a book group I facilitated, the topic of “shame” was raised during discussion of author Wally Lamb’s latest novel, We Are Water. One of the main characters, Annie Oh, had been sexually abused as a child. Her shame was wrapped up in guilt and loss, and as a foster child, she received no professional help. She no doubt felt confused, angry, and she lived in a tangled web of shame and secrecy. For years, her anger festered, expressed in her “outsider art” and by abusing her son. Shame, guilt, and secrets caused darkness and deep troubles in Annie Oh’s family.
What is shame? Merriam-Webster defines shame as: A feeling of guilt, regret, or sadness that you have because you know you have done something wrong. Ability to feel guilt, regret, or embarrassment, dishonor or disgrace
From the Oxford Dictionary we can add: A painful feeling of humiliation or distress caused by the consciousness of wrong or foolish behavior. (Emphasis in bold is mine.)
Shame can be useful for enforcing behaviors that keep individuals and others safe in a society. We want criminals to feel shame for socially unacceptable actions. Unfortunately, many criminals are sociopaths, incapable of feeling empathy, guilt, or shame, which can create frustration for those of us who do experience and respond to these emotions and/or have been a crime victim. Most all of us have felt shame at some point in our lives, perhaps as a child, when learning society’s code of ethics from elders. Sadly, some, like Lamb’s Annie Oh character, carry an undeserved burden of shame throughout life.
The Oxford Dictionary says, shame is a distress caused by the consciousness of wrong or foolish behavior. What is perplexing, and not included in the Oxford or Webster definition, is that too often people feel shame for events out of their control, such as being abused as a child or born with a brain that is wired for a mental illness.
What does shame do? Shame isolates, leads to secrecy and to hiding one’s truth. Shame denies one the ability to make honest appraisal of oneself, one’s life. Shame is the foundation of stigma and most devastatingly results in a reluctance to acknowledge illness and/or seek treatment.
How many times has the media squawked bafflement that an individual who has caused their own death or harm to others had lived with undiagnosed or untreated mental illness? “How could a person or their loved ones ignore obvious symptoms of mental illness,” they ask?
Rarely is a person promoted in their job after they’ve revealed their history with mental illness, even if their work had been stellar…
For those of us who have a loved one living with a mental illness (most of whom are NOT a danger to others), it is not surprising a person fails to seek treatment, or that loved ones weren’t successful in enforcing treatment. Our society feeds the stigma of mental illness with its solid diet of… yes, shame. Rarely is a person praised for their hard work of addressing their mental illness and undergoing treatment. It’s usually discussed in hushed tones. Rarely is a person promoted in their job after they’ve revealed their history with mental illness, even if their work had been stellar, and this despite the long list of highly successful individuals living with brain disorders.
How can we help to detangle this mess of shame, guilt, and secrecy, and diminish stigma?
We can speak about brain disorders openly in the same way we speak about physical disorders. Caregivers, family members, and loved ones must speak up about needing support. Those looking from the outside see no crutches, casts, or blood. Yet, in the home, loved ones are subject to the ill person’s extreme behavioral changes that cause chaos in all the lives around him. Loved ones must change plans as quickly as they are made; they often seem distracted and are overwhelmed. But those looking in from the outside don’t know the truth unless it is spoken about.
Starting a conversation about the impact of a loved one’s brain disorder on our family, and more broadly, our society, is not always comfortable. We still encounter a tone-deafness about mental illness. Recently, when talking about interviewing people all over the country for Behind the wall, a man interjected, “You mean you found crazies all over the country?” I bit my tongue and, after a beat and a breath, I continued my effort to share information about mental illness. Some will back away, because this illness has nothing to do with them or their family. And that’s okay. Fortunately, in our experience, most people to whom we speak about Behind the Wall do understand or want to learn about brain disorders.
For the sake of our neighbors, friends, and because of the prevalence of mental illness across the globe, we continue to share what we know about brain disorders in an effort to reduce stigma and encourage individuals to seek treatment. Speaking openly, without shame, is beneficial for a whole society. We can have stronger and safer communities when our citizens who live with mental illness are not afraid to be diagnosed and treated. National Alliance on Mental Illness (NAMI) states the importance of encouraging quality (evidence based) treatment in terms anyone can relate to:
The human and economic toll is enormous yet often hidden. Untreated mental illnesses in the U.S. cost more than $100 billion a year in lost productivity… Local hospitals and clinics must cope with associated chronic physical diseases. Schools have to open more special education classes. Courts and jails handle a large number of individuals who suffer from untreated mental illnesses. Suicide ranks among the top fifteen most common killers in the U.S. (in the top three among young people), and 90 percent of cases can be attributed to mental illness.
Our society must take responsibility to learn symptoms of an active mental illness. Those of us with experience, and who understand the illness, can lead this effort. An effective step in this endeavor is to demand in our communities that law enforcement, first responders, educators, and anyone else interfacing with the public are properly trained to recognize symptoms of brain disorders and learn how to interact with a person in mental health crisis. Brain disorders cause people to behave in odd ways. No doubt. A person with a mental illness may respond to his own inner processes, which may include frightening voices or paranoid beliefs. Atypical brain activity caused by the illness may be reflected an appearance of “not being all there,” and his responses are unpredictable to outsiders. Understanding brain disorders requires respecting that the input affecting his brain processes is unknowable and that his responses to these inputs influence behaviors that are odd and possibly frightening to an outside observer, or family member. These are behaviors of untreated mental illness, or of a person who has experienced a relapse.
We can all play a part in identifying misplaced shame for an illness that wasn’t chosen by the ill person and the foolish behavior symptomatic of the illness is out of one’s control. We can all do our part to reduce stigma so that people will seek and receive treatment.
We can stop assuming that living with mental illness equates to an inability to hold down a job and living a fulfilling life. Most people who are treated for serious mental illness live full and meaningful lives.
Our faith communities and workplace can be inclusive by understanding that the illness has symptoms that should not be conflated with a person’s character, or behaviors when they are well. We can support a person who lives with mental illness by providing a route for skill-building and work experience.
We can support caregivers of people living with mental illness by simply listening, taking a walk, or having coffee together.
There are many organizations whose mission it is to support individuals and families of those living with mental illness and to address stigma. Among the many, check out:
As always, your comments are most welcome:
Being in public, even just standing in the grocery store line with her adult son, used to be embarrassing for Annie. Her adult son can’t be still. He’ll start bobbing his head. His body is jittery. He could easily be mistaken for a tweaker. She shrugs. “You get used to it,” she says. And he’s done worse.
Having a child who lives with mental illness feels sort of like being the parent who carries a newborn and two toddlers with head colds on the plane for a red-eye, only more extreme. Nobody wants to be near that mess, and everyone has an opinion. Also, there’s a lot of glaring.
In the stares and clucking of distaste that parents of atypical children often absorb, there seems to be a less than subliminal message that these parents chose this messy life and if they only desired things to be different, it could be so. As if these parents are weak. But parents of children with mental illness did not choose this club. Their child didn’t either. There are coping skills to be learned, but like those toddlers on a plane, you cannot control air pressure, or sinus pain, or always fix whatever is bothering them.
A person who lives with mental illness sometimes displays odd behaviors. A person with an injured leg may walk funny for a while and it’s the same for an injured brain; it’s not so odd when you think about it in that way, Right? What’s distinctly different is that a child’s mental illness challenges the stamina of parental love like nothing else. That’s in addition to judgment from others. Rebecca, one of our Behind the Wall parents, explained how excruciating it could be when her daughter, Stella, accused Rebecca that she was not her real mother. Stella’s father, Dan, recounts discomfiting conversations with Stella about the chip in her head. But for Stella, who heard voices clearly and sensed smells that others did not, the chip theory didn’t seem so far-fetched. It did make sense to her because her brain was feeding her different signals than what others know to be reality.
Simply spending time with a person who is experiencing a manic episode and/or psychosis presents challenges. It’s not easy. Depending on where a person is on the spectrum of recovery, there are frequent lapses in logical thinking that sometimes lead to risky behaviors and self-harm. Once, Annie’s son broke into a store after hours. He busted the door, got in, then realized he didn’t know what he was doing and left. He didn’t steal anything but damaged the door. His actions didn’t make sense.
Sometimes there are scenes. Ugly scenes. Jennifer, who lives with bipolar and borderline personality disorder, had developed a history of rages and alcohol use by the time she’d reached high-school age. This behavior was never permitted or condoned by her parents. In one incident, Jennifer had been drinking and was raging and throwing things at her boyfriend’s house. Her boyfriend’s parents banned Jennifer. Sadly, they must have also spread the word that she was out of control and it was about bad parenting. Jennifer’s sister, who had never been part of any such incident, was banned from spending time with the family that lived next door to the boyfriend. A loved one’s illness leaks into all aspects of family life.
As one Behind the Wall parent says, most people don’t know what it’s like to have a loved one who lives with mental illness. Good for them.
Only those who’ve parented a child who lives with serious mental illness can truly understand the challenges involved and the breadth of behaviors that arise because of the illness. Even for these parents, there is much experience required to distinguish between typical bad behaviors versus behaviors driven by the illness. They can’t possibly always get it right.
Parents of children who live with serious mental illness, like those beleaguered ones getting on a plane, aren’t asking for anything more than a little understanding. As one Behind the Wall parent says, most people don’t know what it’s like to have a loved one who lives with mental illness. Good for them. Living with a serious mental illness and being a parent/advocate has challenges that can only be fully understood by others living a similar experience.
Parents whose children live with mental illness aren’t asking anyone to sidle up to their chaos. These parents are also past wishing to be well-liked because major concerns are about keeping their child safe and stable. Parents aren’t asking for solutions, or agreement, or sympathy. Pity is not wanted. Just please don’t judge. And if one were so inclined, even a small gesture of support and kindness goes far for a parent enduring a journey where parental love is infinitely tested.
As always, your feedback is welcome.
The dangers of “coddling” a child who lives with serious mental illness. Five ways to be supportive instead.Posted: July 31, 2014
My biggest mistake was trying to fix everything for him. He never learned how to do it on his own.
This is what a mother of an adult son who lives with serious anxiety and depression now says. From an early age, Jonathan* seemed more sensitive than other kids. During adolescent and teen years he showed symptoms of anxiety and depression. His mother tried to resolve issues for him because mothers want to make things better. But in doing so, she’d give him the solution rather than allow him to make his own way through problems. She did the heavy lifting to get him out of his darkness. She’d say, “Let’s go for a walk.” Or, “How about I take you somewhere.” “Maybe we should watch a movie.” In other cases, she’d shield him from potentially difficult situations. She tried to rescue him. “That was my mistake,” she now admits.
… finding the fine line between being protective and supportive versus coddling for an overly sensitive or atypical child can be shifty.
Protecting a child from physical harm and nurturing through difficult emotional benchmarks are givens in a mother’s job description. But finding the fine line between being protective and supportive versus coddling for an overly sensitive or atypical child can be shifty. Parents we interviewed for Behind the Wall described atypical children who almost always had real limitations in social and school settings caused by anxiety or over-sensitivity. Sadly, it is not uncommon for a spouse or the child’s other parent to disagree about where the line of competency exists, creating friction in the home and between family members resentful of “special treatment”. Disagreement between parents about a child’s competency can have devastating consequences. Expectations that are too high can be overwhelming and unduly stressful. Low expectations send the message that parents lack confidence in their child. An awareness that parents are disputing one’s competence can also create guilt and self-esteem issues.
Madeline Levine, psychologist and author of The Price of Privilege and Teach Your Children Well advises, “Never do for a child what he can do for himself”. This includes navigating on one’s own through difficult emotional territory with support from parents. A parents’ job is to prepare a child to live successfully in the world. Experience is truly the best teacher, and parents are uniquely qualified to provide such opportunities for trying new physical, mental, and emotional challenges. Coddling, by definition, prevents experience and important failures from which one learns. Being supportive means presenting a child with choices and allowing him to gracefully fail and succeed at his own pace along the path he chooses.
For a person who lives with mental illness, though, the line of competency can shift day-to-day, sometimes hour-to-hour depending on the person’s current state of recovery. Sometimes, that line moves backwards.
Here are ways our Behind the Wall parents show support and avoid coddling:
Be honest. Being honest with a loved one about her mental illness and her current state of recovery is the crucial first step toward her recovery. Being well informed by credible sources about the diagnosis and seeking evidence based treatments are necessary for recovery. Ultimately, a person cannot reach recovery without moving toward it on his own volition, which may require professional motivational help. Managing an illness successfully requires knowing facts. Shielding facts in an effort to protect another from the stigma of mental illness only serves to obfuscate the path to recovery.
Give your child responsibilities. Everyone needs responsibilities. Having a goal each day fosters success over time, even if on some days the goal cannot be reached. As one Behind the Wall parent says, even though her son was not yet able to live on his own, he wasn’t broken; he could still clean his dishes. It just may take a little longer for him to remember to do it. As Dan says of expectations for his daughter who lives with schizophrenia, she is responsible for living the best way she can. All of us owe ourselves the self-respect to work every day toward learning better management of one’s own health; for a person living with mental illness it is certainly more challenging than most and often means taking medications and recognizing when treatments are not working. A person may do better one day than others, and may even fail, but everyone has the responsibility to try again. And loved ones must provide support everyday without judgment or criticism.
Teach strategies rather than provide solutions. Keep an ongoing dialogue. A person living with a brain disorder may not always be capable of rational or logical thinking. Sometimes, a person may believe that loved ones or even non-existent people are trying to inflict harm. There is no amount of rational talking that can convince a person who is experiencing psychosis otherwise.
But that doesn’t mean a parent or trusted loved one shouldn’t keep trying to show—by asking questions, for example—how to logically work through paranoid or disjointed reasoning. When her son is experiencing psychosis, Bianca points out behaviors and symptoms that indicate irrational thinking, and helps him to see he is not well. When doing well, she describes the behaviors that reflect failing mental health. She will tell him, “When you were in the shower for six hours, that was not healthy.” She will ask him, “When you’re not doing well, what are some things you can do?” A constant dialogue about recognizing symptoms of one’s worsening illness may be helpful to a person who is in the long and difficult process of learning to manage his own illness. Bianca encourages her son to take a daily inventory of symptoms and think about what has worked for him in the past and what he can do in the future. More than once, Bianca’s son checked himself into the hospital.
Provide an escape plan for potentially stressful situations instead of not trying at all. Along the lines of teaching strategies, avoiding any situations that may have potential for stress can limit an individual’s engagement with community and chances to develop new skills. But stressful situations without an escape strategy can have devastating consequences for a person living with mental illness. Sometimes, social events are unavoidable, or an individual desires to try a new experience. Discussing an escape plan in advance empowers an individual with agency to determine when a situation becomes overwhelming and to act upon it. Planning ahead develops problem-solving skills for managing the ever-changing limitations of one’s mental illness. Behind the Wall father, Dan, encouraged his daughter to pursue a demanding education while emphasizing the always-available option to drop a class should she begin to feel overwhelmed. Bianca, a Behind the Wall mother whose son lives with schizophrenia, prepared her son in advance of attending a wedding. If the crowd became too much for him, she explained, it was acceptable for him to go outside and take a walk or go home. Now, when they go out to dinner, he gets up and goes outside if he needs the escape and nobody is concerned, critical, or judgmental.
Failures are memorable lessons, and with support from a team, a failure can be a safe learning experience.
Welcome failures as opportunities to learn and never be judgmental. Perhaps the most difficult guideline to follow when parenting any child, but especially one who lives with persistent mental illness, is allowing for failure. A person with brain disorders frequently faces situations in which “failing” may pose lethal risk. Failure to manage one’s illness can lead to a psychotic episode, possibly resulting in self-harm or victimization. Assertive Community Treatment (ACT), an evidence-based treatment, provides people with mental illness a safe environment to try new life skills. Failures are memorable lessons, and with support from a team, a failure can be a safe learning experience. One example of ACT service is “supported employment” in which a person’s employer and case manager work in cooperation to increase the employee’s success. The case manager facilitates understanding between employer and employee, assists in working through obstacles and potential job challenges such as communication problems, stressful hours, or short-term memory deficits common for individuals with brain disorders. ACT provides similar support for college students managing communications with instructors and stressful course loads, for example. By providing well-trained advocates to teach and reinforce practical life skills and strategies, ACT decreases day-to-day logistical load for families who are hesitant to allow an adult child to fail.
By the time Jonathan, whose mother admitted she had not allowed her son to fail, reached his early twenties, an age by which he could have begun to understand how to manage his illness, he continued to experience increasingly severe and unmanaged anxiety and depression. He was not progressing in life as he thought he should. He sought help from an uninformed practitioner who did not offer talk therapy but prescribed marijuana** for severe anxiety, which over time, compounded his issues. Though one of Jonathan’s parents is a physician, he refused to listen to advice from either of them. Fortunately, Jonathan finally recognized his anxiety and depression was debilitating and he had not acquired effective tools to manage his illness. He agreed to seek treatment from a doctor recommended by his parents and his life has been improving.
*Names and identities are changed to protect anonymity of the (usually adult) children of Behind the Wall parents
**Studies show that marijuana use is “…potentially dangerous for people with mental illness.”
From National Alliance on Mental Illness web site (www.nami.org):
The overwhelming consensus from mental health professionals is that marijuana is not helpful—and potentially dangerous—for people with mental illness. Using marijuana can directly worsen symptoms of anxiety, depression or schizophrenia through its actions on the brain. People who smoke marijuana are also less likely to actively participate in their treatment—missing more appointments and having more difficulty with medication-adherence—than people who abstain from using this drug.
The relationship between marijuana and psychotic illness, specifically schizophrenia, has been studied for many years and is receiving increasing publicity in the mainstream media. Certainly not all people who smoke marijuana will develop schizophrenia, but people who are at risk of developing this illness—including individuals with close family relatives that have severe mental illness—will be more likely to experience psychosis if they are using marijuana. In this population of individuals, people who regularly smoke marijuana are diagnosed with schizophrenia at a younger age, hospitalized more frequently for their illness and are less likely to experience complete recovery even with high quality treatment. This is particularly concerning, as approximately one-third of people in America with schizophrenia regularly abuse marijuana.
From the Royal College of Psychiatrists website (www.rc.ac.uk):
There is growing evidence that people with serious mental illness, including depression and psychosis, are more likely to use cannabis or have used it for long periods of time in the past. Regular use of the drug has appeared to double the risk of developing a psychotic episode or long-term schizophrenia. However, does cannabis cause depression and schizophrenia or do people with these disorders use it as a medication?
Over the past few years, research has strongly suggested that there is a clear link between early cannabis use and later mental health problems in those with a genetic vulnerability – and that there is a particular issue with the use of cannabis by adolescents.
After an article I wrote was published in the San Francisco Chronicle on November 7th entitled, “Coming clean about mental illness,” we received many heartfelt responses. One mother’s email to us was particularly poignant. She agreed to allow us to provide a portion of it here, as a guest post. We are grateful for her courage to share.
To see the original article to which she reponds, go to: (http://www.sfgate.com/opinion/openforum/article/Coming-clean-about-mental-illness-4962030.php)
On my son’s 25th birthday.
Today is my son’s 25th birthday.
Today is a sad reminder of what little impact I have had on this disease and how small I feel standing up to a most vicious bogeyman: mental illness. This day is a taunting gut check of the limitations even a mother, his most formidable defender, has in protecting a child from this illness.
What should be a happy day for my son and me is muddied with fear, anxiety, angst and mostly guilt— the worst kind of guilt— “Mother Guilt.” It’s a particularly profound kind of guilt, not because mothers like me feel responsible for our child’s illness (though that myth is hard for us to shake), but because mothers, by definition, are “fixers”. We identify needs, solve problems, make the right calls, do what needs to be done – often neglecting our own needs in the process —to protect our child and keep him safe.
I can honestly say I have tried everything and have not succeeded. My son still suffers from mental illness and I can’t fix it. I do not have a cure, a salve, nothing. From the outside, I appear to have failed as a mother, and yet, I have been working, strategizing, and hoping for 25 years, and this road feels endless.
Some days, I am hopeful about where he is, what I can and will do for my son, and even that I am here for him. Other days, there is gut-wrenching helplessness for not knowing what do for him, or how to prevent his self-harm. Parenting him is a rabbit hole of emotion: guilt, hope, sorrow, hope again, and a final re-birth of sadness. I have been told, “one cannot parent mental illness,” and that is supposed to make me feel better but it does not. Parenting, surviving, loving, and guiding a child with mental illness requires ineffable courage and strength I never before could have imagined I could muster.
My experience is too difficult to share with others, too upsetting to talk about, and it’s always a conversation downer. And though my son is always top of mind, I struggle to talk about it. I cannot bear judgment cast upon my mothering.
What birthday card is there for a young man whose mental health treatment has become infinitely more complex by his using substances to self-medicate his bipolar disorder that doctors now admit began in childhood?
No, there is no birthday card for my 25-year-old son who has lived with Tourette syndrome, a brain disorder that hijacked his body with compound tics at the age of three, his head rolling in circles and elbow jabbing at his side, my distraught boy telling me, “It’s not me! It’s my brain and it’s really making me angry!” What birthday card is there for a young man whose mental health treatment has become infinitely more complex by his using substances to self-medicate his bipolar disorder that doctors now admit began in childhood? At eighteen, he was finally diagnosed with bipolar but by then I had even less ability to help him. Because of the havoc that Tourette syndrome, bipolar disorder, and substance abuse wreaked on his brain, I have fewer tools now to teach him how to navigate the real world on his own, or develop the most basic life skills most men his age have acquired and then some.
I am not greedy. I don’t need an Ivy League graduate, a CEO, or President of anything. My accolades for him seem easy to achieve to most of us: he needs to survive the day, then the next one, functionally. I pray for simple things: his happiness, health, love, harmony, and peace, all of which continually elude us because my beautiful boy suffers from mental illness.
On his 25th birthday, I want to tell him how much I love him; that I am always here for him. But no mainstream sentiment expresses the complexities and depth of loving an adult child who lives with mental illness. The lives of adult children who live with addictions or brain disorders do not correspond in any way to the trajectory of most “normal” individuals, or the milestones for which they strive.
For mothers like me, birthdays are annual reminders of what once again has not been resolved, and may never be.
I occupy a front-row seat to his suffering, a season pass to his hardships and there are no time-outs. And while I am unwilling to leave this game, I desperately pray for a reprieve from his suffering, peace for him to rest. I long to see his infant face again, the one for which I possessed the magic to soothe with simple maternal nurturing. I long for simpler times when he found peace in the safety of my arms. In that sacred embrace, I vowed to protect him always. A commitment made by mother to child, a promise I have never broken. I know I am not alone but I can’t help but feel isolated and afraid for that baby I held 25 years ago today.
Parenting a mentally ill child is the hardest thing I have ever done. I love him more than anything in the world and would give everything to change his situation.
On his birthday, what I want to say is simply:
I will love you always, like you forever, and you will always be my baby. I love you my son. Happy Birthday.
As always, your comments are welcome:
*cake image courtesy of notmartha.com
I wrote this post a while ago. Or, shall I say, I’m writing to post sometime in the future because unfortunately it will be timely again.
The nation is again saddened by the shooting massacre in _________. I’m not sure a person can ever become callous to learning of a reckless, preventable shooting spree resulting in the premature end to many lives. This act of rage and violence follows a pattern we know all too well: the shooter is a young man who felt like an outsider his whole life and maybe was recently humiliated in some manner. Maybe he is a military veteran. He was taunted. He had few friends. He became enraged because of an altercation with (check one: family member, former school mate, employee, or employer). The media wants to know, not if, but what signs of mental illness did he display, and when?
Likely, his past history of mental illness was either never addressed effectively because his parents / loved ones couldn’t commit him against his will because by the time it was recognized that he was seriously ill, he was over eighteen, or his parents / loved ones didn’t address his behaviors because of the stigma around mental illness. But a few who knew him— former schoolmates or coworkers, because he had few friends, mention something about him was “different.” He managed to get his hands on weaponry that made him falsely feel empowered. Along with body armor, he carried an AR-15 style assault rifle, the same weapon used in June 2013 by the Santa Monica killer and in December 2012 in Newtown. On his person, he may have had a handgun and additional magazines. Certainly, he had more than one weapon on him.
Is that about right?
As I write this on a random summer day, I know there are mothers whose adult child has been diagnosed with a serious mental illness such as bipolar disorder or schizophrenia, who are, on the day this is published and the weeks that follow, cringing. There are thousands of mothers both uncomfortable and well versed in this conversation about mental illness. I know because this is what they have told me. When these killing sprees occur, society wants to assign blame and often turn to the parents. They ask, “Why didn’t the parents / loved ones do something?”
Parents of adult children diagnosed with serious mental illness cringe because those who do not understand mental illness will look upon them and say, “Aren’t you afraid your mentally ill child will hurt you?”
Because our society conflates mental illness and violence, perpetuating the myth that a mental illness diagnosis indicates , no, predetermines that a person is more likely to commit a violent act. But violent tendencies occur in people in equal rates whether diagnosed with a serious mental illness or not. Statistically, according to NIMH, most violence inflicted by a mentally ill person is self-harm, that is, not perpetrated on others. And yet, after every mass shooting, media and society rub mental illness and violence together, contributing to the frothy stigma damaging to those living with mental illness and arguably to our society as a whole.
Still, other parents whose children live with serious mental illness cringe because they have witnessed erratic behavior associated with certain mental illness crisis, such as psychotic episodes that include delusional thinking. These parents, more than anyone, know how difficult it is to get an adult person committed and adequately treated before they do become dangerous, most usually to themselves. These parents also know how our health care system makes it challenging to keep them in for full treatment. These parents also cringe because they know when their child is psychotic and on the street, there is a risk law enforcement will misconstrue their behavior and their mentally unstable child will either be shot or land in jail while still in a psychotic state. And it’s not like they’ll receive adequate treatment in jail either.
These parents include Kerry, the mother who called the university to inform the counseling center that her son had gone off his medication, was drinking heavily, and had smashed everything in his dorm room. Kerry warned the school hoping to get support. Instead she was told, “Our hands are tied.” Then they told her, that yes they know his history, that he may have gone off his meds, that he may be wandering about not knowing where he is but he hasn’t failed his classes yet and we can’t (or won’t) prove he is a danger to himself or others. Even though the last time this happened, he almost perished from alcohol poisoning and hypothermia.
The mental illness stigma circles around the misperception that a person diagnosed with mental illness is dangerous to everyone around him, and that there is no hope for a person diagnosed with mental illness. But there is hope unless the stigma impedes loved ones and the ill person from accepting the illness and seeking effective long-range treatment. Stigma is a barrier to treatment.
In the many hours of the news cycle ahead of us, and days and weeks ahead, one wonders if it is possible to have a real discussions about the confluence of factors leading to gun violence and other- separate conversations about the many possible causes and treatments for mental illness, and recognize the connecting point between the two are but a pinpoint that can be made even finer with more accurate dialogue.
As always, we welcome your comments.
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.