Understanding Chronic Sorrow

There is sneaky grief and loss that caregivers of children with mental illness experience. Chronic sorrow, as it has been called, is "ambiguous, one that rarely subsides over time, and is rarely acknowledged" (Richardson et al., 2012).

As a caregiver of children who have struggled with mental illness, I have learned to celebrate the joy and stay in deep gratitude for healthy times—yet there is a constant dull ache that persists, and chronic sorrow gives this a name for me. In my professional role, I have listened as chronic sorrow creates an additional barrier for caregivers, complicating the stress and anxiety of caring for their children.

Grief and loss author Megan Devine explains that "there are losses that rearrange the world" and "pain that transports you to an entirely new universe, even while everyone thinks nothing has changed" (Devine, 2017, p.6). For caregivers supporting children with mental illness, the chronic sorrow that follows them changes everything, from losing who they thought they would be as a caregiver to how their relationships shift to how the world responds to their children and approaches mental illness.

An Unexpected Path

Chronic sorrow originates when caregivers realize their powerlessness to heal their children. With no definitive rubrics for how to care for a child with mental illness, caregivers try multiple treatments in an effort to give their child relief. Even as a social worker, it took becoming a caregiver of these children to understand the pain of this.

As you experiment with different therapies or medications, many of which fail or bring unwanted side effects, caregivers watch their children struggle. My husband and I listened to our children speak of intrusive thoughts telling them to hurt themselves; we endured years of failed medications and therapy while we desperately sought to quiet their brains. This powerlessness changes caregivers, who experience a deep longing to heal their children and a unique sadness at their inability to do so.

Expectations for their children and hopes for how they thought their lives would be are changed by mental illness. Their children may have unexpected behaviors that are separate from their family norms and values, not taught but generated by illness. Their children may not get invited to birthday parties, may be too scared to attend school, or may be kicked off of sports teams. The losses their children experience are felt keenly by caregivers.

Our children were placed in therapeutic day schools separate from their community schools because of the level of support they required. This separation created a deep pain and longing for what could have been and is a hard loss to name.

How do you answer questions about why your child is no longer at that school? It wasn't that people didn't care or didn't ask. Our lives felt so unexpected and overwhelming that we didn't have the words to describe them, and it felt cruel to share that this could even happen. If it could happen to us, it could happen to anyone.

Societal Shame

Without relief or healing for their children, chronic sorrow persists, becoming entrenched. Caregivers may find themselves as we did: with escalations in the level of need so significant, they are forced to use larger community crisis support.

Police, ambulances, in-home clinical support, and state care are among these. When outside support enters your home, you often feel that you are actively failing the one true task you have as a caregiver: to keep your child safe.

Source: Sheilah Gauch

This was also my profession, and I was powerless. The pain of having to call the police for help was nothing I had experienced. A combination of fear that authorities wouldn't understand mental illness and terror at the possibility of losing control of my child's care created abject doubt and vulnerability.

When the police shared that our neighbors had also called them, the world fell eerily silent as shame flooded me. I then walked out of my house to ride in an ambulance with my small child. There were few experiences more demoralizing and emotionally crushing than that one, and few that taught me more as a professional.

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There is a "60 Minutes" interview on mental health stigma explaining what I felt at that moment: how traditional rituals around illness are lost to these caregivers. No one brings casseroles to a family when a child is mentally ill as they likely would when there is a physical illness ("60 Minutes," 2014). Few even check on them before they call the police. There is often no outward recognition from neighbors, family, or friends of the silent (or not-so-silent) pain being endured in these caregivers' homes.

Systemic Shift in Perspective

As a professional, I have the qualitative data of countless caregiver stories similar to ours. I have listened to the chronic sorrow as caregivers take note of additional losses they sustain as the illness refuses to relent. The loss of family and friend support, loss of marriage/partnership, loss of income as they desperately try to find providers to help, and ultimately loss of their own health and well-being. The full picture of what a caregiver faces comes into view: a life of searching for answers and praying that their children will survive, even if the rest of their life is gutted.

Dr. Tom Insel, the former Director of the National Institute for Mental Health (NIMH), has said that "there may be no group more disenfranchised and more mistreated in our society than those with mental illness" (Insel, 2022, xxvi). He goes on to report that those suffering from mental illness die, on average, more than 20 years prematurely, with a life expectancy similar to that seen in the 1920s.

When caregivers realize the truth of this, chronic sorrow has solidified. Knowing that by virtue of the class of illness their children are afflicted with, a caregiver's well-being is less acknowledged, less supported, and less understood is the final blow that shifts their reality forever.

Resistance to Change

We felt Dr. Insel's words keenly in our family; we felt disenfranchised and left behind. At the exact moment we lost hope, believing we would lose one of our children to suicide, we learned they had an illness known as PANS/PANDAS (Pediatric Acute-Onset Neuropsychiatric Syndrome/Pediatric Autoimmune Neuropsychiatric Disorder Associated With Strep). This illness occurs when viruses or infections cause brain inflammation, resulting in psychiatric (termed neuropsychiatric) issues. We suddenly gained access to different types of treatments, and our children began to heal.

At the time of this diagnosis, our family had a full team of Department of Mental Health (DMH) in-home support, along with multiple outside providers. Within six months of beginning treatment for PANS/PANDAS, our children healed so significantly that they were discharged from DMH/state care. We recently saw one of our previous in-home mentors. She remarked how strange it was that the professionals never spoke about this illness again after we left care.

Why would we not run toward different treatments for mental illness? Neither child presented as "typical" PANS/PANDAS. The root cause of their illness had been missed for so long that they met the criteria for multiple DSM-5 diagnoses.

As a professional, I knew the science and research substantiating the link between the body and brain was groundbreaking. I wanted to know how many other children could have been missed. Saving one more child seems worth the time exploring this new brain-body connection.

Yet the lack of interest in my children's healing brought back chronic sorrow in a different way. I felt abandoned professionally, not just personally.

Source: Sheilah Gauch

Hope and Healing

Showing that their children matter and deserve to heal is the ultimate antidote to caregivers' chronic sorrow. We race towards cures for other pediatric health issues, such as cancer, yet suicide is now the second leading cause of death in ages 10-14 years old. (CDC, 2022). Mental illness deserves to have hope for healing and for us all (caregivers and professionals alike) to be brave and allow the status quo to be challenged and innovation to occur.

This includes acknowledging the chronic sorrow these caregivers carry. When professionals are able to sit with their intolerable grief without shaming, blaming, or trying to fix it, we allow caregivers to heal, giving them the space and energy needed to help their children.

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