Five Questions to Help You Explore Internalized Stigma Around Mental Illness

This might sound odd, but I felt well prepared to parent a kiddo with life-threatening chronic illness. My brother was born with hemophilia in the early 1970’s. ER visits and hospital stays were a routine part of our childhood. I learned IV therapy in middle school. As a teenager, I could find my way between the ICU, radiology and the lab, and locate the best vending machines after hours (hint: hospital basement).

When my son Zack was diagnosed at birth with hemophilia and then later with a congenital heart defect, it was frightening, but not overwhelming. I had mad skills. It felt like I had been training decades for this. We became a family of advocates. We went to conferences, led parent support groups, testified before Congress and lobbied for health care reform. We told Zack’s story to anyone who could improve access and care for chronically ill children. We were loud and proud.

Then, when Zack was 16, he was diagnosed with treatment resistant major depressive disorder. And those ugly beasts that Brene Brown calls the shame gremlins moved into my head. I told myself that I was protecting Zack by not talking to anyone—even close friends and family—about his depression. Someday, my reasoning went, Zack would be better and able to move on with his life. Since mental illness is so stigmatized, I told myself (completely unironically) it was important that no one knew what was happening.

As the parent of a child with a life-threatening physical illness I had felt resilient and capable. As the parent of a child with life-threatening mental illness I felt helpless and deeply ashamed. How badly do you have to fail as a mom, I kept asking myself, to have a child who wants to die?

Luckily, Zack had an incredible psychiatrist and care team. Intensive individual and family therapy helped me see that the same childhood that prepared me to be skillful in response to physical illness, had also taught me toxic lessons about mental illness. I came to understand that blaming myself was actually centering myself (and my shame) in Zack’s illness. My internalized stigma was making Zack’s treatment and recovery much more difficult.

I wasn’t a “bad” mom. I was a mom who grew up in a culture where mental illness stigma was so deeply embedded that it was reflexive, like breathing. Early on, Zack’s psychiatrist asked if there was a history of major depression in our family. I assured him that there was not, just many, many relatives who were alcoholics. I remember his response, “Happy people don’t drink themselves to death.” I grew up surrounded by relatives who used life-threatening amounts of alcohol to numb their pain, and never recognized that trauma and depression.

Our early childhood lessons are both enduring and impactful. I’m still fabulous at starting IVs and navigating hospital corridors. And we can learn new and different skills when we choose to. Suicide is now the second leading cause of death for people 10-34. So, it's time to learn new skills to promote mental health.

A first step is to explore our own internalized ideas and stigma around mental illness. Here are five questions to get you started

1. Early messages. When do you first remember hearing about mental illness? What was the context? What thoughts or emotions are linked to those memories? News and media portrayals are often sensationalized and show people with mental illness as dangerously unstable and a threat to others. These depictions prevent help-seeking.
2. Attributions. Who do you think is likely to have mental illness? What are common causes of mental illness? To what extent to you believe that people with mental illness can control their illness or symptoms? People with mental illness are more likely than people with physical illness to be seen as directly responsible for or able to control the symptoms and severity of their illness.
3. Personal experiences. How have your own strong feelings of sadness, loss, or anxiety shaped your perceptions of mental illness? What do you see as the difference between “typical” struggles and mental illness? Lack of conversation about mental health and illness means that people often have difficulty distinguishing between tough times and mental illness that could benefit from treatment.
4. Perceptions of Treatment. What do you know or believe about treatment for mental illness? Is it effective? Necessary? Risky? Something else? There are many effective treatments for mental illness. Still, the belief that treatment for mental illness is ineffective or unnecessary prevents many people from talking with their providers.
5. Going Forward. What would happen if you started talking more openly with the people in your life about challenges to mental health? What if you shared your own experiences? How might people respond? Mental illness is the leading cause of disability in the U.S. Almost half of all Americans will experience mental illness in their lifetime. Yet less than half of people with mental illness receive treatment. Being part of a family or community that talks openly about mental illness increases treatment seeking and decreases suicide risk.

This might sound odd, but learning to talk openly about depression and other mental illness has made my family much happier. And safer. So. Much. Safer. That’s the bottom line. Open, shame-free conversation about mental illness is suicide prevention.

I can promise you that there are people you love who are struggling silently. They are trying really hard to be strong. They keep going forward, even when it’s overwhelming. And some of them think that asking for help would make them seem weak. Or make you think less of them. But you know better. You love them so much that you're willing to learn new skills and have uncomfortable conversations. So here’s one last resource to help: Seize the Awkward will teach you how to recognize when someone needs help and then to have that conversation. You can do this. You have (or can learn) mad skills.

This might sound odd, but I felt well prepared to parent a kiddo with life-threatening chronic illness. My brother was born with hemophilia in the early 1970’s. ER visits and hospital stays were a routine part of our childhood. I learned IV therapy in middle school. As a teenager, I could find my way between the ICU, radiology and the lab, and locate the best vending machines after hours (hint: hospital basement).

When my son Zack was diagnosed at birth with hemophilia and then later with a congenital heart defect, it was frightening, but not overwhelming. I had mad skills. It felt like I had been training decades for this. We became a family of advocates. We went to conferences, led parent support groups, testified before Congress and lobbied for health care reform. We told Zack’s story to anyone who could improve access and care for chronically ill children. We were loud and proud.

Then, when Zack was 16, he was diagnosed with treatment resistant major depressive disorder. And those ugly beasts that Brene Brown calls the shame gremlins moved into my head. I told myself that I was protecting Zack by not talking to anyone—even close friends and family—about his depression. Someday, my reasoning went, Zack would be better and able to move on with his life. Since mental illness is so stigmatized, I told myself (completely unironically) it was important that no one knew what was happening.

As the parent of a child with a life-threatening physical illness I had felt resilient and capable. As the parent of a child with life-threatening mental illness I felt helpless and deeply ashamed. How badly do you have to fail as a mom, I kept asking myself, to have a child who wants to die?

Luckily, Zack had an incredible psychiatrist and care team. Intensive individual and family therapy helped me see that the same childhood that prepared me to be skillful in response to physical illness, had also taught me toxic lessons about mental illness. I came to understand that blaming myself was actually centering myself (and my shame) in Zack’s illness. My internalized stigma was making Zack’s treatment and recovery much more difficult.

I wasn’t a “bad” mom. I was a mom who grew up in a culture where mental illness stigma was so deeply embedded that it was reflexive, like breathing. Early on, Zack’s psychiatrist asked if there was a history of major depression in our family. I assured him that there was not, just many, many relatives who were alcoholics. I remember his response, “Happy people don’t drink themselves to death.” I grew up surrounded by relatives who used life-threatening amounts of alcohol to numb their pain, and never recognized that trauma and depression.

Our early childhood lessons are both enduring and impactful. I’m still fabulous at starting IVs and navigating hospital corridors. And we can learn new and different skills when we choose to. Suicide is now the second leading cause of death for people 10-34. So, it's time to learn new skills to promote mental health.

A first step is to explore our own internalized ideas and stigma around mental illness. Here are five questions to get you started

1. Early messages. When do you first remember hearing about mental illness? What was the context? What thoughts or emotions are linked to those memories? News and media portrayals are often sensationalized and show people with mental illness as dangerously unstable and a threat to others. These depictions prevent help-seeking.
2. Attributions. Who do you think is likely to have mental illness? What are common causes of mental illness? To what extent to you believe that people with mental illness can control their illness or symptoms? People with mental illness are more likely than people with physical illness to be seen as directly responsible for or able to control the symptoms and severity of their illness.
3. Personal experiences. How have your own strong feelings of sadness, loss, or anxiety shaped your perceptions of mental illness? What do you see as the difference between “typical” struggles and mental illness? Lack of conversation about mental health and illness means that people often have difficulty distinguishing between tough times and mental illness that could benefit from treatment.
4. Perceptions of Treatment. What do you know or believe about treatment for mental illness? Is it effective? Necessary? Risky? Something else? There are many effective treatments for mental illness. Still, the belief that treatment for mental illness is ineffective or unnecessary prevents many people from talking with their providers.
5. Going Forward. What would happen if you started talking more openly with the people in your life about challenges to mental health? What if you shared your own experiences? How might people respond? Mental illness is the leading cause of disability in the U.S. Almost half of all Americans will experience mental illness in their lifetime. Yet less than half of people with mental illness receive treatment. Being part of a family or community that talks openly about mental illness increases treatment seeking and decreases suicide risk.

This might sound odd, but learning to talk openly about depression and other mental illness has made my family much happier. And safer. So. Much. Safer. That’s the bottom line. Open, shame-free conversation about mental illness is suicide prevention.

I can promise you that there are people you love who are struggling silently. They are trying really hard to be strong. They keep going forward, even when it’s overwhelming. And some of them think that asking for help would make them seem weak. Or make you think less of them. But you know better. You love them so much that you're willing to learn new skills and have uncomfortable conversations. So here’s one last resource to help: Seize the Awkward will teach you how to recognize when someone needs help and then to have that conversation. You can do this. You have (or can learn) mad skills.