Grace and Maria are two Asian American young professional women living in the Midwest. They recently became friends and bonded over shared experiences of dealing with mental illness in their families. In this interview, they hope to show how important it is to share stories in order to break the stigma about mental illness in the Asian American and Pacific Islander community.
1. Why are you passionate about mental health in AAPI communities?
Maria: My mother has suffered from psychotic delusions since I was a young girl, which caused our family tremendous pain. We endured this pain in silence for many years due to stigma and shame. Learning more about the origins and prevalence of mental illness – and eventually getting comfortable with talking about my mom’s mental illness with family members and even strangers – has been a challenging yet transformative experience. I hope that more AAPI families can learn how to navigate these challenges to improve outcomes and reduce suffering within our communities.
Grace: My mom was diagnosed with late onset schizophrenia about three years ago. My family’s experience opened my eyes to the complexities of accessing mental healthcare and understanding the related legal and justice systems. Navigating these systems can be confusing, emotionally exhausting, and extremely lonely. As an Asian American, I found that the loneliness created by stigma regarding mental illness was exacerbated due to lack of culturally competent mental health professionals and community support services serving immigrant communities.
2. What is most difficult about loving someone with a mental illness? Is there a particular experience or experiences that stands out for you?
Maria: My mom’s condition is somewhat unique because it prevents her from being able to even perceive that she is mentally ill (i.e. she has complete “lack of insight”). In the past, we used to fight a lot when I tried to convince her that she was sick— she thought I was accusing her of being a liar when I said her delusions weren’t real. After reading a book called I Am Not Sick I Don’t Need Help by Xavier Amador, I learned a better approach for helping loved ones accept treatment even when they think they are perfectly healthy. One of the things I still struggle with is how to respond when she wants me to support her delusional beliefs, while showing her the love and support she needs from her daughter. Also, going out together in public can be difficult because sometimes my mom starts talking to other people about her delusions, and she can’t see that it’s making everyone around her uncomfortable.
Grace: As a daughter, I was in denial that my mother had a mental illness for a long time. Many of my mother’s delusions and paranoid thoughts were related to her experience as an immigrant, a woman of color, and a mother of daughters. As a social activist myself, I found myself understanding the roots of many of my mother’s paranoid perspectives on society, such as the overreaches of government surveillance or dangers of being an immigrant woman society of racialized sexism. As a result, by the time I recognized she had a mental illness, she was in a very severe psychotic stage. One of the most difficult experiences was taking the steps through the court system and with the police to involuntarily hospitalize my mom. For the entire week my mother was in the hospital, from the time the police came to pick her up at her home, I doubted whether we (my sisters and I) had done the right thing from the time the police came to pick her up from her home until she was released by the hospital.
3. Mental illness doesn’t just impact the individual, it impacts the entire family. How has your role in your family changed or been impacted by mental illness in your family?
Maria: My mother’s mental illness was a big factor in my parents’ divorce, which led to both my parents leaning heavily on me for emotional support.. As the oldest of four, I often took on the responsibility of handling my mother’s mental illness, while my younger siblings were somewhat protected from learning all the disturbing details of her delusions when they were growing up. Now that they are more mature, I think my mom’s condition has brought me and my siblings closer together.
Grace: My mother’s mental illness has put a lot of strain on the relationship between siblings in my family. Each of the siblings in my family has a different relationship with my mom, and has different limitations related to how much time and emotional energy we are able dedicate to my mom’s mental health,. These differences can cause a lot of strain. Supporting someone with a severe mental illness such as schizophrenia can be traumatizing in a lot of ways, so it also affects our mental health, which affects our relationships with each other and other relationships in our lives, including our significant others.
4. What do you do to take care of yourself, while you are also a caretaker? What have you found to be most helpful, and what advice would you give to someone who is also struggling?
Grace: Taking care of your own mental health is so important, especially when you have a loved one with a mental illness. As the oldest of four, I took on a lot of responsibility for my mom’s mental health, and often put my own mental health, and my relationship with my partner on the back burner. But the reality of it is that you can’t help others without first taking care of yourself!
I got a lot of support from talking to other caretakers with similar experiences whom I met through family-to-family support groups provided by National Alliance for Mental Illness. Sharing my story with others has helped in my healing journey, and helped to build community where those connections didn’t previously exist. I have also gained a lot of strength from remembering my friend Tez, whom I lost last year to suicide. His motto was “You Ain’t Alone.” I try to remember that daily.
Maria: My biggest piece of advice as a caretaker would be to talk to someone about your situation, ask for help, and do it early. When I was a kid, my dad didn’t know what to do and had no one to help him. And even though I knew something was wrong, I never talked about it to anyone outside of home, not even my closest friends. In the past few years, I started opening up to other people. I met Grace, and her willingness to be vulnerable about her situation helped me feel more comfortable about opening up to her as well. Since then, I’ve been amazed by the number of people I’ve talked with who have also struggled to deal with serious mental illness in their families. Some of them were strangers and some were people I had known for years. Sharing has gotten much easier with practice, and I no longer feel as helpless or alone as before. Talk to others, share your experiences, and help break the stigma.
Also, the quality of care is so important – for both you and your loved one. The wrong psychiatrist can be worse than no treatment at all,.. In the Midwest, it can be difficult to find Asian American psychiatrists, but hopefully you can find someone who is at least culturally competent by asking for referrals through your local NAMI chapter or your local Asian American social services agency. Search for a quality provider, get your family member’s consent to speak with the psychiatrist if possible, establish a relationship with the psychiatrist, and work together with them to help your loved one so you are not left in the dark. Don’t be afraid to seek counseling for yourself either!
Editor’s Note: The names used in this blog post are pseudonyms, to protect the identities of Grace and Maria’s mothers.