Our Behind the Wall blog and book explores the emotional journey of parents who advocate for their now adult children diagnosed with serious mental illness. The primary criteria we set for this project from the beginning was that the finished work remains worthy of the parents who contributed, contain useful information, effectively convey that parents are not alone in their journey and offer hope that recovery is achievable. Our intent is to provide truth and solace.
Our interviews with parents yielded valuable information and hope. Parents needed to tell stories and we were grateful and honored to be there to listen. Throughout the interviews, consistent themes bubbled up in the stories including chaos, feelings of isolation and grief, coping, hope and recovery.
As we travel around the country for book signings and other speaking engagements, we continue to meet inspiring parents and hear stories. We consistently hear that we are not alone. There are many who live in recovery or have a loved one who does.
Because we feel a responsibility to speak on behalf of parents who share stories with us, below are a few things we’ve learned on the road we’d like to share.
What we learned on the road by talking about mental illness:
We are not alone. We cannot say this enough.
Families are yearning for a voice that recognizes and understands the grief, chaos, confusion and frustration associated with living with a person who has untreated mental illness and is trying to navigate the mental healthcare system.
Hearing stories from others and telling one’s own story has shown to be informative and healing. We all need to be heard. We all need to know there is hope for the difficulties we are experiencing. Knowing what has helped others shines light into the darkness and unknowing of a mental illness diagnosis.
It often seems as if there is constant talk about mental illness in the media and the assumption is that there are resources. Yet at speaking engagements, we are reminded that when a parent or loved one begins the journey of advocating for another, feelings of isolation and grief are new, raw and overwhelming; it’s difficult to see past the roiling emotions to find resources and most importantly, hope. And that’s why we tackled this project in the first place—to address the emotional journey of parents. To help others see the long view.
In order to make a difference for families, we continue to talk about mental illness using factual, clear, non-judgmental language.
After a hospital stay, mental health professionals don’t always provide critical follow-up protocols or advice.
Recently, a parent told us that upon her son’s release from a two-week hospital stay following a mental health crisis, there was no discussion from the mental health professionals (doctors, nurses, hospital administrators) about support or follow-up. “Not one social worker or nurse recommended NAMI (National Alliance on Mental Illness) as a resource or outpatient treatment, nor referred us to a doctor to renew my son’s prescription,” she said. “We had no idea what to do. There was especially no discussion on what we, as parents, should do or even what we could read to learn more…We had no idea how to help him reintegrate into the community and go back to school.”
This may not be the case in every hospital but it certainly was the case for this family and many others. We were disappointed to learn this but were not surprised. We are aware of countless stories (some our own) in which a healthcare provider did not fully understand the larger picture of managing mental illness, nor was the important historical perspective of the parent respected or considered in the treatment, which usually resulted in problematic or even tragic outcomes. Further, after a patient’s first mental health crisis, medical professionals often fail to convey that mental illness requires long-term management.
As family members and healthcare advocates, we can continue to talk about the reality of serious mental illness and that there is support. We can also work with—and on the behalf of—our own NAMI chapters to get information about resources into the hands of mental healthcare providers, especially after a psychiatric hospitalization.
Families and those diagnosed need to hear from health care providers that there is HOPE and RECOVERY.
We have learned that mental healthcare providers don’t always understand that the parent or the loved one who serves as advocate is crucial to one’s recovery. The parent or person serving as advocate needs to be included in treatment. Period.
Studies show that a person recovering from any health trauma has a much better rate of recovery when well supported by loved ones and community. Who knows a person’s health history better than a parent who watched the illness unfold?
While Elin was speaking at a university hospital to mental healthcare providers in October, a young man who lives with schizophrenia told the group that one psychiatrist told him he would find recovery and that there is hope. The young man said, “That is what gave me hope and today I am in recovery.”
Early diagnosis is beneficial… if it’s possible.
Research shows that early intervention makes a significant difference in treating mental health issues, yet finding treatment for a person under eighteen is thwarted by a lack of available pediatric psychiatrists, a pervasive myth that individuals under eighteen cannot be diagnosed and by HIPAA laws that restrict the communication flow between parent (advocate) and medical professional. Almost every parent laments, “If only my adolescent had been diagnosed earlier…” And, “I knew my son/daughter’s behaviors were more than ‘adolescent angst but no one listened.’”
As John G. Looney, MD, MBA, Professor Emeritus of Psychiatry and Behavioral Sciences and Professor of Pediatrics at Duke University advises, therapists can treat the symptoms that are seen. There is no need for a label as long as the symptoms are being addressed. It is critical for parents, healthcare providers, and the adolescent to work as a team to address presenting symptoms.
Parents and loved ones are hurting.
Unless one has lived a similar experience, the chaos and grief are unimaginable. At book signings, we often meet parents who are deeply emotional, feeling raw from the experience. Fortunately, everyone in the room understands. And that’s what we learned: there are deeply compassionate people in the world ready to hold others upright and walk with them through difficult times. Which leads to…
We can teach others how to support us by asking for what we need; by asking for help the way a parent of any sick kid does it. Yes, I’ll take the casserole and errand running, please.
The best way for parents to get support is to reach out, ask for help.
It’s hard to ask for help, but when dealing with a family member’s health crisis—let’s say it’s cancer— it’s perfectly acceptable to request help. Even commonplace to create a whole website about a person’s struggle.
Recently, my friend’s child was hospitalized for a series of procedures and surgery. They set up a CaringBridge.org web page so that friends and family could provide support—meals, errands, caring for the sibling— and could follow medical progress through the daily blog written by the child’s mother. Friends and family were thus able to provide support without feeling we were being intrusive.
Why wouldn’t we do this for a family supporting a person in a mental health crisis? Families whose loved one is hospitalized for a mental health crisis need support too. Most friends want to help but may not know how. Maybe they don’t understand mental illness. Chalk it up to stigma.
Because of stigma, mental illness is awkward. We can teach others how to support us by asking for what we need; by asking for help the way a parent of any sick kid does it. Yes, I’ll take the casserole and errand running, please.
Resources are available in most communities; accessing resources can seem elusive.
Families need to learn about evidence-based treatments and where to find them in their community. We are always surprised to learn how challenging it can be to obtain services for the ill person and support for the caregiver. NAMI is a great place to start in most communities, though there are many others.
Anosognosia, or the inability to recognize one’s own mental illness, is the most vexing challenge.
Anosognosia affects about 40 percent of people who live with serious mental illness. At almost every event, we get a question about how to encourage a loved one experiencing anosognosia into treatment. Anosognosia is the root of many challenges in advocating and treating a person with serious mental illness, especially those who are over eighteen. A person cannot move forward in his treatment without acknowledging the diagnosis. We always recommend Xavier Amador’s book, I AM NOT SICK! I Do Not Need Help!* Amador developed the LEAP system of dialogue to gently guide an ill person toward insight and ultimately toward recovery on his own volition.
An important note: a person is more likely to address his illness when his loved ones and others close to him are in agreement about the illness, diagnosis and treatment.
“Letting go” and self-care are difficult concepts for parents.
It goes against a parent’s instincts to think of oneself But taking care of oneself provides the sustenance to care for others. All the parents we interviewed and we meet stress the importance of taking care of oneself.
Let’s keep getting the word out about coping strategies, hope and recovery. Please introduce yourself if you attend one of our events. To find out where we will be speaking next, keep checking our event schedule at: www.behindthewallstories.com/home/gallery/
As always, we welcome your comments:
By Elin Widdifield
I’m grieving. I lost my son. Somewhere he’s still there…It’s okay to let yourself grieve. It’s going to be a lifelong process.
– Bianca, the mother of a 25 year-old son who lives with schizophrenia.
Jennifer was self-disciplined and structured. Now we had a child who couldn’t cope in school. That was like having a different child. It was as if one day we opened the door to find someone else had moved in.
— Esme, the mother of a 20-year-old daughter diagnosed with
borderline personality disorder, bipolar disorder, and substance use disorder.
Throughout our interviewing process for Behind the Wall, and as we continue talking with parents we meet as we travel around the country to talk about our story collection, we have found that the same themes continue to bubble up. We expected parents to talk about problems with HIPAA laws, lack of access to evidence-based care, complexities of a dual diagnosis, medications, and the court system…and we were right. But one of the most poignant and recurring themes continues to be the subject of grief.
When a loved one becomes ill, each family member experiences grief, including the person living with a mental illness. For example, parents grieve over the temporary and permanent cognitive and behavioral changes in their child and the requirement that parent and child revise expectations for short and long-term educational, professional, and personal opportunities. Siblings grieve over changes in personality and abilities that alter relationships; family focus often shifts to the needs of the ill child, which can create a sense of loss for other children and alter a family’s dynamic. A person who lives with mental illness grieves the loss of himself and what is lost cognitively, such as the ability to read books or sit through movies.
All family members may experience isolation from their community due to stigma and because outsiders often can’t comprehend, or choose not to learn about the experience of having a loved one living with mental illness. The chaos and confusion that goes on behind the walls in these homes is often undisclosed to friends, neighbors, and even to the mental health care providers, leading to more isolation.
The Merriam-Webster dictionary defines Grief in part as the following:
A: deep and poignant distress caused by or as if by bereavement
B: a cause of such suffering
Parents of adult children living with serious mental illness likely identify with poignant distress and suffering. There is no deeper emotional suffering than that of losing a child—even just parts of that child altered by illness either temporarily or permanently.
When we began interviewing parents for our story collection, the first question we asked parents was to tell us about their child as an infant through adolescence. We wanted to know about their child’s talents, their personality, and later interests and friends. We wanted to see if parents had a library of good memories in the midst of the chaos that defines living with a loved one suffering with a brain disorder. Most all parents brightened while talking about their child’s early years. There were fond memories of family vacations, special talents, and achievements in sports or academics. One parent relayed a story about how charming her son was from an early age— and still can be when he is stable, and compliant with his treatment.
Seeing our newborn’s face, we imagine the possibilities, hopes and dreams. We think, here’s a clean slate! And we plan to do everything right for this pure, beautiful, gift. This little place in our heart grows with these imaginings of who he will become and how will he change our world, and how much love we will always have for him. Gazing into the tiny bit of perfection created by what can only be miracle, we don’t imagine the illness that comes later and we tell ourselves, we will protect. Always. To a new baby, no parent ever says, “I think you’re going to have mental illness and abuse substances.”1
When my son, Joseph, was diagnosed with a mental illness, my love for him never wavered but my inner world, the place that held the idea of who he was as well as all the imaginings and dreams of who he would become, collapsed in despair. I found myself isolating from others, giving up activities I had once enjoyed, and lying on the couch, reading madly to find out what I could do to ‘fix’ things. I became paralyzed with the fear of worst- case scenarios. I overate cookies-and-cream flavored ice cream to the point where I still cannot bear to look at that flavor. My husband, also in deep pain, grieved differently. He tried to soldier on, busied himself with work and suggested ways to ‘Fix It’. Our son who lives with mental illness felt great loss too. One day he asked, “What has happened to me? I’m not the same person anymore.” Meanwhile, our older son began to pull away from the confusion. We were all in a sad funk, each feeling a loss, and each in a world of pain.
Fortunately, an astute therapist pointed out that we were experiencing grief. She explained to us that there was hope, and hope leads to recovery—magic words for a suffering family. But there was work to be done—addressing the grief was the first step.
The journey was jagged.
Everyone’s experience with grief is personal; my husband’s method of coping was to be busy with work, I isolated and become obsessive, and our elder son pulled away. There is no judgment for how one does grieve, but working through it is critical for moving forward, and having hope in one’s life again.
Joseph, diagnosed with mental illness with co-occurring substance use disorder, got help through ACT.2 The Assertive Community Treatment team helped him to address head-on his mental illness, medication, and sobriety head-on; the team counseled on how to reintegrate into the community and learn healthy habits for his physical health. It is a day-to-day struggle for people with mental illness to live a structured, healthy life in order to stay out of the hospital. He needed non-judgmental support from loved ones and we needed to work hard to learn about the illness and how best to support him. As he began to work toward these goals, and his health improved, Joseph’s grief was greatly reduced and hope returned. Our whole family began feeling hope. My older son felt he was getting his brother back and I no longer felt gripped by feelings loss and fear. Most importantly, time with family became enjoyable again, as it was before Joseph’s illness.
I worked through my grief with therapy. I found meditation. I engaged in quiet activities that I enjoy. I spent many hours of walking in the woods, kayaking, and talking with other parents. Through this process, I rebuilt that place in my heart that holds my hopes and imaginings for him—the same place that holds dearly to memories of Joseph as a smart and funny little boy. We have home movies of him playing sports, dancing happily, and saying funny things. I began to feel gratitude.
One would imagine that re-visiting memories would make my loss feel unbearable, and it did for a while. But it began to work for me. My husband was a few steps behind me in his process, but he also re-visited all our wonderful memories of who our son once was while we also both began to get to know this new person who was emerging healthy, talented, and smart—a young man in Recovery!
Recently I spoke to a gracious group of mental health care professionals in Winston-Salem, NC, at Novant Outpatient Behavioral Health Hospital. I was happy to learn that they are addressing grief for each family member. I believe it is the job of mental health care providers to help families through this process. When we are grieving, we cannot make good decisions for ourselves because we are in a cloud of emotions, we are often isolated, and everything feels confusing, and dark.
Telling our stories, and hearing the stories of others, greatly reduces our feelings of isolation, and helps us to heal and move forward. As a co-facilitator of the NAMI (National Alliance on Mental Illness) Family-to-Family class, I know that learning about the latest research for brain disorders, and sitting in a room full of people who are learning to cope with a ‘new normal’ as they navigate this ragged road, is also healing and informative.
If you are a person who has a mental illness, or if you have a loved one who is struggling, find an astute mental health care professional who will help you to address your grief, and loss. It is a painful journey, and for me, not unlike having shards of glass stuck in my gut day after day. But one must walk through Grief to get to Hope, and eventually to Recovery.
2 ACT, Assertive Community Treatment is community -based treatment for people with serious mental illness, and often with co-occurring substance use disorder. ACT is a team of professionals who help people to reintegrate into the community by living semi-independently, engaging in everyday tasks, to gain job skills, or attend school. www.dualdiagnosis.org
Comments always appreciated!
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:
Our guest blogger tells us how challenging it is to live “in the moment”.
I hold my breath waiting. Panic stuck in my throat, wondering if this is beginning of another crisis my son is creating. Is he going to experiment and lower with his meds and become manic? Will it be like the time he became manic and paranoid?
That time, after alerting the police that the CIA was watching him, he threw out all his trophies, awards, photos, well-written essays, things representing highlights from his past, from before he became ill. Later, I was able to retrieve most things, buried deeply in the garbage and sludge-covered. He packed the essentials: a gallon of sterile water, one change of clothes, sketchbook, a few dollars and not much more. He set out to live on the streets so the CIA couldn’t study him. My two sisters and I drove down every street downtown, tracing the path to his familiar haunts, hunting him down as if he were a runaway puppy.
We found him, euphoric, ready to enter the homeless shelter. He admitted he hadn’t slept in a week and needed help.
The chaos he has created in the past stems from his decision to walk into a bar and drink a beer, and his distorted notion that he is a ‘normal guy’ who can drink a beer. One beer, and be fine. But for him, one beer leads to a weeklong, or months-long binge, blackouts, ruined relationships, lost job, failed college semester, and all this followed by shame and guilt, and the long haul of putting it all back together again.
So, I would hold my breath waiting, knowing what had been built could all fall apart. In one beer.
But while holding my breath, I forget the gratitude for the previous three years of calm and serenity his recovery has brought to our family. I forget gratitude for the hard work and day-to-day struggle that is his, just to live a meaningful life with solid relationships, work, and balance in his life. I forget how much work he does to earn a moment of joy, and happy family moments.
It’s not healthy to stop my life, become paralyzed in fear…
It’s not healthy to stop my life, become paralyzed in fear; I know this. And I’m not fun company. I’ve watched my husband sleep, eat well, go to the gym, work, and put his worry into neat compartments that only occasionally leak out. I will never know how he has been able to do this, but we are all different.
At the Al Anon meetings they tell me to let go and live my own life. Of course I know this is what one should do, but letting go and taking care of myself requires more discipline than holding my breath. Taking care of myself, over worrying for my child, is not natural for mothers.
But how long can a person hold their breath?
I came to realize that I cannot continue to live this way, starving myself of oxygen, denying myself my own life. I need to be strong for that moment he reaches out, asking for help. I needed to change, and it can only come from me.
I found a therapist who knows about addictions and mental illness. She helped me grieve the loss of my son, the easy son I once had; the son who won trophies, wrote essays, and had healthy relationships. To allay my fear and angst, I began to meditate, sometimes a walking meditation on the beach, or in the woods. Exercise and sports had always been a part of my life and it was time to incorporate these activities back into my life. I needed to live more consciously, beginning with eating well, not mindlessly consuming a pint of cookie dough ice cream in one sorrowful sitting.
The most difficult part for me was becoming social again. I had lost relationships during the chaotic times of my son’s illness. Let’s face it, people don’t understand, and I wasn’t fun to be with anyway. I made new friends who are also in the club of knowing mental illness and addiction. These friends could hear what I was saying without flinching or pitying. I don’t want pity.
What has helped give me perspective and insight is being well informed. I read and learned everything I could about the dually diagnosed, those with serious mental illness and substance use disorders. I found my local NAMI to be most helpful, especially the Family-to-Family class that my husband and I attended together. I found support and community there too. I also called upon my faith, that faith I had felt abandoned me during the hard times.
I feel connected to my son, and this is key. Feeling connected to our son gives us the best chance that he will turn to us when he is failing. It’s the best hope we can have. Feeling connected enables me, ironically, to let go a little more. Knowing that he is aware that we will always support his recovery and never judge his journey is the best insurance that he WILL turn to us on his own volition. Because ultimately, his recovery must come from him. I now recognize that holding my breath or living in fear will not give him tools to manage his illness.
How we stay connected is by expressing our deep appreciation of his strengths and struggles, and telling him frequently how much we respect his hard work. Believe me, I want to keep him in a bubble to protect him. But I don’t pity him or coddle. I support his efforts. I’ve learned the importance of letting go and allowing him to make his own choices and decisions, because I won’t be around forever to protect him. I enjoy his humor, his new quirkiness, and his artistic passions. There are many things I want for him but he may not want these things for himself. I’ve worked on learning to stay quiet, enjoy the moment, and find gratitude. I am grateful he’s alive and has integrated into his community, and is moving forward in his own way with his own volition.
Sometimes, I slip, and find I am holding my breath: after learning he’d “had a beer with friends,” or one recent night when he didn’t return home. The difference now is that I recognize when I am not living in this moment, but rather flashing back to the chaos of the past, and worrying about things that may or may not ever happen. My physical health is much better when I live mindfully, with balance, and joy. Every day offers the chance to find joy. I sound like a bumper sticker. A few years ago those sayings evoked anger rather than peace for me. I don’t want to be in this club of parents whose children struggle with a dual diagnosis. I want to be a parent of an adult child whose biggest problem is finding the right career, or breaking up with his girlfriend, or learning to budget his money.
But this is where I am in this moment.
Your comments are always 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.