The importance of staying out of shame and blame to allow for hope

by Devon Frye

We would never tell a child with cancer they weren’t “trying hard enough” if the chemotherapy wasn’t working, yet this language is what children and families I work with often report they hear when their mental health symptoms aren’t improving. Increasingly, they are sharing a loss of hope that their symptoms can improve—no treatment seems to be working, and many feel that providers are discouraged with them.

I asked Meri Viano, Assistant Director at the Parent/Professional Advocacy League (PPAL) of Massachusetts, if they are hearing similar concerns from families. She answered emphatically yes, sharing a recent PPAL survey where caregivers were asked about mental health stigma. Seventy-three percent of respondents reported feeling that people blame them for poor parenting and 91 percent of parents believed people blame them for their children’s behavior.1

According to the American Psychological Association (APA) mental health stigma creates barriers to healing, contributing to people feeling devalued, dismissed, and dehumanized.2 Some experts even call this a “culture of blame” that imposes a "poisonous and paralyzing power" on mental health care and service delivery.3 Could mental health stigma be confounding our ability to make measurable progress in this mental health crisis?

The most recent Youth at Risk Survey (YRBS) indicates that 29 percent of high school students experienced poor mental health during the past 30 days and suicide continues to be the second leading cause of death for those aged 10-14 and 20-24.4,5 Statistics for those in marginalized populations are worse, with 41 percent of LGBTQ youth stating they considered suicide in the past year and suicide rates for Black youth aged 10 to 17 rising 144 percent.6,7

Having sat with caregivers who have lost children to suicide, these statistics are terrifyingly real, yet I had never considered how stigma may be impacting these numbers until my children experienced mental health symptoms (significant OCD, panic disorder, ADHD, sensory issues). Through helping them, I discovered the stigma I never knew I had, learning firsthand the barriers stigma creates.

This experience highlighted the importance of being vigilant in assessing the implicit, unconscious biases we may hold, especially those of us who are providers. When we understand, and change, our relationship with stigma, we allow for hope—the belief that healing is possible.

Stigmatizing Language

The APA suggests that using person-first language, which doesn’t imply blame or shame, is the best practice for combatting stigma.8 We had an amazing team of professionals supporting our family who led with this. The language they used with us was initially collaborative and strength-based.

When treatments recommended weren’t working as expected, and my children's symptoms were escalating, this language shifted. When we as professionals feel ineffective and stressed, or reach the limits of our abilities, we may resort to using more stigmatizing language.9

Calls from the school counselor now led with words such as “oppositional,” “defiant,” and “unwilling,” suggesting my child was making a conscious choice to not get better. Questions then came to me as a caregiver, implying I may be the reason my children weren’t improving. Could I shift my parenting? Was I setting enough limits on poor behavior? One provider told me they could no longer help us; my child was not accessing the treatments offered.

Shame, and blame, magnified the daily, chronic, stress response I experienced watching my children suffer. Losing hope was terrifying. Shame, according to Dr Brene Brown, can have a similar impact as trauma, and it splintered my relationship with providers.10 (For more on caregiver trauma see my article "The Whole Child").

Treatment Resistance

All of this felt oddly familiar: professionals losing hope, my child being seen as being beyond help and me being to blame for their symptoms, like a societal norm I felt pulled to accept. When I came across The Open Minds Survey for Health Providers, developed to assess professional stigma, I began to understand why.11

The survey highlights one of greatest risks of professional stigma, and what providers were communicating to me about my own children: pessimistic views of recovery, or “therapeutic pessimism.”12 Providers are asked if they agree with the following:

- “There is little I can do to help people with mental illness.”13

- “More than half of people with mental illness don’t try hard enough to get better”. 14

Therapeutic pessimism perpetuates the belief that some people are beyond our help, even “treatment resistant.” Current research indicates that 20 to 60 percent of patients with psychiatric disorders are treatment-resistant.15 Statistics for major depressive disorder indicate that 30 percent of people suffering are not recovering.16

This societal norm was also a family norm I grew up with. Some loved ones would never recover from their illnesses, instead living lives of chronic symptom management. Stigma and shame meant we didn't talk this about this; we also didn't question it.

Self- Stigma

Dr. Patrick Corrigan, a leading researcher on stigma, argues that the most effective solution to combating mental health stigma is sharing stories of lived experience.17 My own self-stigma—the negative attitudes, including internalized shame, that we may have as a result of our own mental health issues—had left me trapped and voiceless, unable to counter the shame and blame I perceived coming from professionals.18

I was a Division 1 All-American swimmer when an onset of depression and anxiety forced me to leave my sport and college. For a long time I believed my illness was my fault—had I just tried harder, maybe I would not have lost everything. I saw myself as a failure then—and when my child's symptoms started, I felt like I was now failing as a mother.

This resulted in me not exploring pediatric acute-onset neuropsychiatric syndrome/pediatric auto-immune neuropsychiatric disorder associated with strep (PANS/PANDAS) the first time I heard of it. I was desperate to be seen as capable, of complying with provider recommendations. I was less open to exploring a new diagnosis, especially one I hadn't heard of.

Six years later, I heard of PANS/PANDAS again from another mother. By this time, one of my children had become so debilitated by their symptoms I had to act. I brought them to their pediatrician where ultimately they met the criteria for PANS/PANDAS. With this new diagnosis, we accessed different treatments: anti-inflammatories and antibiotics. They healed in ways I had never seen before as a social worker. Their OCD abated. Their depression lifted.

My children weren't treatment-resistant. Their illness was not my fault, nor was it theirs. Stigma was a blind spot I inherited at a young age, almost as if it was pre-verbal. Changing my relationship with stigma saved my children’s lives and shifted my professional practice forever.

#James Donaldson notes:Welcome to the “next chapter” of my life… being a voice and an advocate for #mentalhealthawarenessandsuicideprevention, especially pertaining to our younger generation of students and student-athletes.Getting men to speak up and reach out for help and assistance is one of my passions. Us men need to not suffer in silence or drown our sorrows in alcohol, hang out at bars and strip joints, or get involved with drug use.Having gone through a recent bout of #depression and #suicidalthoughts myself, I realize now, that I can make a huge difference in the lives of so many by sharing my story, and by sharing various resources I come across as I work in this space.  #http://bit.ly/JamesMentalHealthArticleFind out more about the work I do on my 501c3 non-profit foundationwebsite www.yourgiftoflife.org Order your copy of James Donaldson's latest book,#CelebratingYourGiftofLife: From The Verge of Suicide to a Life of Purpose and Joy

www.celebratingyourgiftoflife.com

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A Path Forward

At the school I help oversee, we have removed stigmatizing language from our writing and speaking. Descriptive terms such as: “disrespectful,” “lazy,” “attention seeking,” “provocative,” “rude/impolite,” “incapable,” “oppositional,” “manipulative,” and “defiant” are part of an ever growing list on a document we titled “Words We Try Not to Use.”

Eliminating blame and shame from our speech naturally lended itself to teaming with our students and caregivers, who then reported feeling seen, heard and validated, sometimes for the first time in years.

As a team we became more intellectually curious. If a student isn’t healing, we want to know why. Do they have the correct DSM-5 diagnosis? Did they have a medical rule out as indicated in the DSM-5 differential diagnosis?

The more we wondered what might have been missed, the more students began to find healing in ways they previously had not, by accessing new diagnoses, even new treatments. We found students who had missed medical issues (PANS/PANDAS, long COVID, lyme, thyroiditis) causing their mental health symptoms. Watching them heal was a powerful reminder: mental health is medical.

Not only can mental health have medical causes, mental health has medical implications. We know childhood trauma correlates to a greater likelihood of chronic health conditions and living with a mental health disorder shortens life expectancy by an average of 14.66 years. 19,20

Everyone is worthy of healing and every life matters. When we get to the edge of our professional abilities, we can not stop searching for answers. Patient and caregiver blame are not evidence based treatment modalities, they only separate us from those who need us most. Acknowledging our own stigma allows us to become allies for those suffering, offering for hope to change the trajectory of this crisis. https://standingabovethecrowd.com/?p=13304