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:
Within a few weeks of starting middle school, a sixth-grader in my son’s class died by suicide. The principal, who was also new to that middle school, acted swiftly and appropriately to the crisis. His communications to the school community contained information about how to talk to one’s child about the event and how grief can manifest. His message was clear: It’s confusing to process this tragic event and important to allow time to talk it through. In addition, resources were provided to students who needed them while at school, and to parents during an evening information session. Thankfully, ours is a supportive community.
Naturally, the school community was shocked. Death by suicide in the US is statistically more common in teens (ages 15-24), ranking as the second most common cause of death. The perception seems to be that suicide is low for adolescents (ages 10-14), but sadly, according to the CDC, it ranks as the third most common cause of death. These statistics are horrific.
The student from our community was also so young; begging the question, “How could a person who has lived barely twelve years have already given up?” Parents wanted to know more about the circumstances of this student’s life and mental health history, though this was thankfully kept mostly private. Maybe knowing some specifics could explain something we all had difficulty understanding and could prevent it from happening again. Secretly, we searched for a factor leading up to this tragedy that is not shared by our child or existing in our family life to assure us this tragic event was an anomaly. One can become selfish when it comes to our own. We look for the “Oh, I get it” moment that allows us to say, “See? There’s the reason.” But there really is no acceptable explanation. It’s simply heartbreaking.
What may cause a person to attempt suicide, particularly those within the 10 – 14 age group, is the impulsiveness that comes with an emerging or untreated brain disorder. Stress is a significant factor in triggering brain disorders that disrupt brain connectivity. Those living with brain disorders often have a lower stress threshold. But of course, we will never know the specifics of this student, nor should we unless the family wanted it so. I’m grateful that (from what I could tell) the family’s privacy was respected, without stifling important discussion.
Because of this event’s emotional repercussions and the concern over the copycat phenomenon common with teen suicide, education about depression and suicidal ideation that is commonly woven into high school curriculum was made age-appropriate and brought into this middle school. Students were taught how to recognize when a friend may need support or intervention and where to get it. Students were taught that if someone expresses he wants to “give up” or says something like, “what’s the point,” a responsible friend should seek advice from a trusting adult. Getting support for your friend, students were told, is not betrayal. These are important messages.
My son shared a class with the student who died, though they were not friends. Still, my son was affected by the event. In the days and weeks that followed, I remained open to difficult discussions about death and suicide and repeated the message to my children about the importance of identifying when a friend may require intervention and how to convey to a person who seems to be in distress that they matter and that resources exist.
But at some point, my son had heard about copycat suicides and worried that one of his friends might attempt suicide. He asked, “What if I cannot stop my friend from doing the same thing? What if he doesn’t listen to me?”
Oh my. In the interest of creating a safe and supportive community, had we burdened these young kids – barely out of elementary school – into thinking it was their responsibility to protect others? Were we setting ourselves and our children up to feel responsible for a person’s death by suicide?
The anguish in my son’s voice over feelings of helplessness and the recognition of his ultimate inability to protect his friends suggested I had placed undue burden. His sorrow was crushing. And familiar. All parents know this wrenching feeling of not being able to control all the levers and conditions of our child’s life. He was feeling that, though for his friends and loved ones.
It is not uncommon for suicidal plans to be disrupted by another’s simple act of acknowledgment and caring.
There is no question in my mind that thoughtfully engaging with a person who seems to be in emotional distress and encouraging him to seek help is more beneficial than ignoring odd behaviors and hoping for the best. Acknowledging a person who may be slipping into darkness can make all the difference for them in getting help or not; a person may not even know how unwell he has become or that there are resources to help him. It is not uncommon for suicidal plans to be disrupted by another’s simple act of acknowledgment and caring.
But when a person seems unable to get well, or more tragically, dies by suicide, it doesn’t mean that someone is to blame. This seems obvious, but the parent, loved one or friend of a person who dies by suicide always wonders if they could have done something differently. It’s even a fleeting thought for parents or loved ones who know on a rational level that they have provided all the support and resources within their grasp. It’s always there; the thought, I could have saved him.
There were many gems of advice provided by the parents my sister, Elin Widdifield, and I interviewed for our Behind the Wall project. These parents have adult children who live with serious mental illness and all of them have genuine fears about their child being at risk for self-harm or behaviors that make them vulnerable. Because death by suicide is common for those who live with serious mental illness, these parents are confronted by its reality. A parent once told us, that if you’ve done the best you can for your child, “You can’t blame yourself for their death or their success. There is only so much control you have.”
In fact, that was one of the most common and best bits of advice. There is only so much control you have. Accepting this fact is healing. A loved one can provide ample support and resources but a person must take the mantle to get better. Or not.
Still, witnessing risky behaviors of a child who has an untreated mental illness is worse than having your heart ripped out through your throat. Many parents share the sentiment that they’d rather feel the pain themselves than watch their child suffer. I can tell my child how to ask for help, and-remember-I-told-you-don’t-do-drugs, but out of my sight, I have no control. A person who has delusional thinking isn’t going to make good choices no matter how much he promised when mentally well, or sober or both. It doesn’t mean we are bad parents, loved ones, or friends.
I told my son that being a good friend or loved one means never giving up. But this does not mean a person has to endure abuse from others (another topic) or take responsibility for another’s actions. I will never give up on the people I love. I learned from my sisters and mentors, there is a solution to every problem and that’s what I tell my own children. And when he encounters the sadness that life brings, he will carry it, and his parents will stand beside him every step of the way.
But what I cannot do is solve his problems. I cannot make bad things go away. It’s simply not possible. Not realistic.
There but for the grace of god go I.
Suicide deaths ARE preventable. Here are online resources for suicide prevention:
 For more information about statistics regarding death by violence and death by suicide, please refer to the website for the Centers for Disease Control (CDC): http://www.cdc.gov/violenceprevention/suicide/statistics
 According to United States Department of Health and Human Services, “… people with severe mental illnesses are over 10 times more likely to be victims of violent crime than the general population.” For important information about Mental Health Myths and Facts, see http://www.mentalhealth.gov/basics/myths-facts.
by Elin and Mary Widdifield
The death of a young person is one of life’s hideous and indelible experiences; it shakes a community to the core. As if this experience isn’t heartbreaking enough, a death by suicide adds a layer of bewilderment. In the grieving aftermath there are gut-wrenching examinations and questions. Why? How could it be? How could this tragedy have been prevented? In a packed church a few Saturdays ago, this was the somber scene I witnessed at a memorial for a twenty-five year-old man, the son of my friend.
Colin’s* memorial was filled with young people in their twenties. His friends and colleagues, confused and in disbelief, clung to one another for support. “Why did Colin do this?” I heard a young man whisper. Friends couldn’t fathom why a graduate from a prestigious university, who had achieved a level of success and tracked on an admirable career trajectory, would end his own life. How could it be? He was ambitious and well liked.
But in a gut-wrenching eulogy, his mother bravely told the story of Colin’s ongoing battle with a brain disorder. She explained there was a family history of depression, but still, she explained, loved ones were in utter shock by his death. There had been none of the typical warning signs such as previous attempts, loss of interest in work or friends, nor had he given away possessions. He seemed to be managing his illness.
… her mention of his illness further illustrates how hard he worked every day, therefore elevating his other accomplishments to greater significance.
It is remarkable that a mother burdened with unimaginable grief would make the point to speak openly about her son’s mental illness at his memorial. Or is it? Had her son struggled with cancer or any other chronic illness she would have been remiss not to mention his “brave struggle” in the context of his life. His illness, after all, was a challenge for him just as it is for one in four across the globe. And given how far we’ve come to understand brain disorders, her mention of his illness further illustrates how hard he worked every day, therefore elevating his other accomplishments to greater significance.
There is no logic in a life is cut short and in such tragic times, one searches for solace, often from a pastor or rabbi. It’s an understatement to say that the family and community feel raw and vulnerable and that words of comfort from a pastor are precious. So after Colin’s mother’s impassioned eulogy, the chapel remained silent but for sounds of muffled weeping when the pastor stood to deliver his final words of comfort. Sadly, this pastor’s concluding statements were seriously misguided:
If you have worries and anxieties in this fast-paced world, filled with texting, the internet and meetings, give your worries to God so you can prevent this sort of thing. So many people fight demons, but we don’t stop to pray to God to help us fight these demons. And we are not judging Colin for what he did. He suffered greatly and we will not judge him for what he has done.
I couldn’t believe what I was hearing and wished he hadn’t spoken. I had to ask the person sitting beside me if I’d heard him correctly. Being told we could simply pray away demons left me feeling as though I’d been transported to the Salem Witch Trials. Did he believe mental illness was about demonic possession? Did he really mean to say we will not judge Colin? Was he implying that ordinarily, it would be a sin to allow oneself to become ill? Did he think that people actually cause their own mental illness by not praying enough? Right there, in that packed church, a clergyman was perpetuating stigma and casting judgment and misinformation amongst a vulnerable mass.
Misinformation about mental illness leads to tragedies. It is potentially catastrophic when spread by clergy who are specifically charged with guiding grieving and vulnerable souls from darkness. More concerning is that, according to Health Services Research, those who themselves struggle with a brain disorder, first seek clergy in greater numbers—23.7 percent versus the 16.7 percent of those who seek a medical doctor or a mental health professional. Health Services Research article further states that,
Nearly one-quarter of those seeking help from clergy in a given year have the most seriously impairing mental disorders. The majority of these people are seen exclusively by the clergy, and not by a physician or mental health professional.
In other words, many of those seeking help for their mental illness may be told to pray to fight their demons and are not always directed to seek professional help from a medical professional. It’s frightening to think a person may seek counsel and not be directed to a resource that could save their life. As a comparison, would a person managing their diabetes be told that prayer could reboot their endocrine system?
* * *
Interestingly, at the very same time Elin witnessed one pastor spread misinformation and stigma about mental illness, I was speaking at a Fresh Hope® Ministries conference just outside Omaha Nebraska where Pastor Brad Hoefs, along with his colleagues and congregation, are leaders in mental health awareness and education for faith-based organizations.
According to Fresh Hope® Ministries, 30 percent seek their pastor first or instead of a medical or mental health professional, yet only 3 percent are qualified to address these issues adequately. While I was unable to verify this low percentage, an article posted April 15, 2015, by Ministry International Journal for Pastors shockingly cited that 37.3 percent of pastors believed people with mental health challenges could be possessed by demons—a number disturbingly high. On a positive note, the article also states that a “large majority (91.3 percent) of pastors expressed willingness to consult and even collaborate with mental health professionals (95.4 percent would make a referral to a mental health professional if necessary), both within and outside of their churches.”
Most faith leaders know, and statistics bear out overwhelmingly, that individuals prefer to seek counsel from their clergy and many feel more comfortable negotiating personal challenges in the context of their faith community. And as those leading the charge to better educate faith leaders about mental illness say, there is reason to believe this natural support system can appropriately address spirituality and mental health issues. A person who is well supported within an inclusive community has a better chance for mental health recovery than one who is not. This also applies to advocate/caregivers in need of support.
Mental health advocate, speaker and author of Troubled Minds: Mental Illness and the Church’s Mission (IVP Books), Amy Simpson, makes the case for educating our faith leaders in more strident terms. Says Simpson, not doing so is sinful:
It’s easy for most to see that if you told people with cancer, diabetes, or kidney failure that prayer was the best way to treat their life-threatening illness, and because of your counsel they refused medical treatment, you would be contributing to their death. Do you realize serious mental illness is also a life-threatening condition?
Many faith-based organizations are working hard to address the 25 percent of their congregation that live with mental illness. Within miles from the church where Elin heard one minister suggest that worries and anxieties could be prayed away, Rev. Gove Elder and his wife Barbara launched “Faith Connections on Mental Illness,” a program based in Chapel Hill, North Carolina, designed to unite area faith communities in the understanding of mental illness. Faith Connections’ mission is “To work with all faith communities to welcome, include, support, educate, and advocate for individuals and families who are living with mental illness.”
During the panel discussion sponsored by Fresh Hope® on that same Saturday, psychologist Sarah Voss discussed plans to locate counseling services within the church to increase accessibility and approachability for members. Because when people know they are among those from their own community who share values, they feel more at ease accepting help and can more easily learn to cope and find hope.
Following the death of their youngest son, Matthew, who died by suicide, Kay and Rick Warren of Saddleback Ministries have, along with their followers, “united together to journey alongside people living with mental illness and their families in a holistic way.” And indeed, Saddleback provides resources for loved ones and pastors from churches around the country to assist them in ministering to their congregation. Their Mental Health Resource Guide for Individuals and Families (Saddleback Resources 2015) delivers straightforward information about mental health conditions and signs. Partnering with Saddleback Church, Lifeway Research created a Study of Acute Mental Illness and Christian Faith (2014, part of their Thriving Ministry Series) that offers guidelines for how to best guide members who are addressing mental health challenges while staying close to scripture with headings such as “BREAKING THE STIGMA” and “How to Make an Effective Referral to a Christian Counselor.” In my cursory review of this publication, there is no mention of praying away demons or suggestions that deeper prayer can eliminate the need for therapeutic drugs. There is, however, a section dedicated to finding medical professionals who are also Christians.
Recently, I had the distinct pleasure of meeting with Mental Health Initiative Coordinator JoAnne Forman of Rodef Shalom, which is located in my hometown. Forman is organizing a speaker’s series and workshops for her congregation to address mental health issues and support for their congregation.
For many, faith and prayer play an integral role in their sobriety and mental health. Families and those who live with mental illness and addictions need to hear messages with accurate information and of inclusiveness, and acceptance. We all need to be held at some point, and for those who live with mental illness or have a family member who does, sometimes just asking for support is challenging enough. With faith-based organizations positioned in the heart of our communities and so integral to finding hope and healing, it’s simply baffling that any person with such influence would be so ill-informed about an illness that is so remarkably common.
Many have found their faith community integral to their emotional survival and stamina. As one of our Behind the Wall contributors say, “This faith keeps me going.” We need to work within our own communities to educate our leaders who have the potential to help many.
There is hope.
*Fictitious name is used to protect the family’s privacy.
Faith Connections on Mental Illness (www.faithconnectionsonmentalillness.org)
Fresh Hope® (http://freshhope.us/about-fresh-hope/)
Saddleback Mental Health Ministries (http://saddleback.com/connect/ministry/mental-health-ministry/lake-forest)
If you have thoughts about suicide or have lost a loved one to suicide, you may find this website useful: www.allianceofhope.org
Your thoughts are always welcome:
 http://onlinelibrary.wiley.com/doi/10.1111/hesr.2003.38.issue-2/issuetoc pages 647–673, April 2003.
 While Fresh Hope® cites these statistics, it is unclear from where they were derived. However, in other studies about faith based organizations and mental health support and services, these statistics do seem viable.
 (For more about Amy Simpson, please visit: http://amysimpsononline.com/2013/09/evangelicals-youre-wrong-about-mental-illness/#sthash.4Ygq7OQL.dpuf)
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
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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.
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Sometimes the stories are difficult to hear. Maybe the stories are too close to home; maybe the stories present a reality we’d prefer didn’t exist.
And it’s so unpleasant—talking about chaos in the home and grief parents experience watching their child change as the illness manifests. The ugly scenes! The awkward moments! And worse, some die as a result of behaviors or disordered thinking brought on by the illness.
Maybe if we don’t talk about it, it will go away.
May is Mental Health Awareness Month and those of us who live with a brain disorder, or have a loved one who does, will be talking about it. We make some people uncomfortable. But we need to talk about it to give hope to others. Yes, that’s right, hope.
Since publication of our book Behind the Wall: The True Story of Mental Illness as Told by Parents, a collection of true stories, my co-author sister, Elin Widdifield, has been approached by friends and acquaintances who say, “I had no idea you were going through so much. I’m sorry.” Elin appreciates this concern and knows it comes from a genuine place, but we didn’t interview other parents to garner pity for them. None of the parents, Elin included, want pity.
In the words of Esme, one of our contributors, the reason for telling one’s story is to simply help another parent. “If I can just help one person, it will be worth it.”
Telling one’s story, and listening to others, is wisely encouraged by the National Alliance on Mental Illness (NAMI). The act of telling and listening is informative and healing.
There is chaos, danger, and even death in the stories told by our Behind the Wall Parents who have witnessed their child’s illness unfold. That is reality. Sometimes a loved one doesn’t reach recovery. Sometimes they do. But why does anyone really need to embrace this brutal reality? Why shouldn’t we just go about our merry way, talking about celebrity mishaps and what Emeril is making for dinner?
Because one in four adults have been diagnosed at one time in their lives with a mental illness. One in seventeen lives with serious mental illness such as bipolar disorder, severe depression, severe anxiety, schizoaffective disorder or schizophrenia. And their loved ones are impacted also.
A person living with untreated mental illness creates tremendous chaos in the home and in the lives of his or her loved ones. When a person is out of control—has frequent rages, runs away, uses drugs, or all of these things—it can drive families into isolation. Parents in this situation feel that no one else can possibly understand what they are going through. Adding to feelings of isolation is that parents are often harshly judged for the “bad behavior” of their child. Stories illustrate that a child’s extreme behaviors may possibly be a sign that treatment is needed. Sharing how parents overcame the isolation and chaos helps others to not feel so alone. When a parent has no idea how to help her child and begins to lose hope, stories about celebrities don’t help. Stories about others who share their experience offer hope.
Talking openly and honestly deflates mental illness stigma that is usually the barrier for many who desperately need treatment. Stories show it can get better with evidence based treatment. Describing outcomes without effective treatment (self-inflicted harm or even death) or with effective treatment (a fulfilling life), illustrates that seeking professional help is not a weakness but an act of resolve, strength and requires hard work and a willingness to change.
But there are actions a parent or loved one can take to more successfully cope and to increase chances for recovery for a loved one: join NAMI for family support, nurture one’s own health and spiritual needs, find evidence based treatment as soon as possible.
Talking about mental illness informs others that there isn’t really anything specific that causes it. But there are actions a parent can take to more successfully cope and increase chances for recovery for their child: join NAMI for family support, nurture one’s own health and spiritual needs, find evidence based treatment as soon as possible. Talking honestly about recovery, a parent/advocate can learn there will be setbacks and it isn’t anyone’s “fault” nor is it the end of a chance for recovery.
But why do others need to know so much about mental illness? Because if it doesn’t run in your family, why should you care?
Brain disorders runs in families but impacts society. Encouraging early intervention, which increases chances for recovery, and community based programs with evidence based treatments, make more economic sense then waiting for a person to endanger themselves or get into a tangle with the law, or worse.
Our communities need to be inclusive and support those working hard to manage serious mental illness. Many of our most successful citizens live with mental illness. They just don’t talk about it.
The question is, why aren’t we making all the months Mental Health Awareness Months? Well. We are.
Thank you for visiting our blog. As always, we welcome your comments.
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.