Life with Psoriasis as An Asian American Can Mean Eating Bitter
Ever since I was diagnosed with psoriasis, at the age of 8, over 40 years ago, my life with the disease has unquestionably been influenced by my identity as a Chinese American. From making therapy decisions to coping with the emotional impact, my journey with psoriasis has straddled East and West.
I was the first in my family to be born outside Asia. My dad left my mom and brother behind in Taiwan when the engineering school at the University of Missouriâ€“Rolla invited him to study for a masterâ€™s degree. The family reunited when he graduated, living in Kansas City, then Connecticut (where I was born), and finally the San Francisco Bay Area.
I grew up in a mostly white neighborhood in the California suburbs, one of only two Asian Americans at my elementary school. I was bullied and ostracized not only for being Chinese, but also for having a visible skin disease. My self- esteem took a nosedive in the process.
Western and Eastern Psoriasis Treatments
My early psoriasis treatment required drives to the Oakland Kaiser dermatology clinic for light therapy three times a week and â€œputting on medicineâ€ each evening â€” my dad slathering a mixture of coal tar in Aquaphor ointment over my multiplying and expanding psoriasis lesions.
The scent of coal tar still brings me back to my childhood. So does the smell of the herbal remedies my parents bought on our weekend trips to San Franciscoâ€™s Chinatown, packed in brown butcher paper.
During the week, my parents would boil the herbs in water, strain them out, then make me drink the horrible-tasting concoction. When I resisted they would lecture me on the Chinese way of â€œeating bitterâ€ â€” a proverbial way of describing how to endure hardship.
Over time I began to resent going to Chinatown and drinking the bitter herb extracts that didnâ€™t seem to help my psoriasis much. Still, my parents insisted I use these traditional treatments along with the coal tar and phototherapy, reminding me of Chinaâ€™s rich 5,000-year history of natural medicine.
Overcoming a Psoriasis Flare
There was always another Chinese herbal remedy to try. I once took a snakeskin powder supplement; the thought was that since snakes shed their skin, the powder could help me shed my psoriasis. Unfortunately, it only upset my stomach and made my psoriasis scaling worse. Another time I topically applied a medicinal liquid that I acquired when I traveled to China after college. My skin cleared for the six weeks of the trip, but my psoriasis broke out again after I returned home.
Still, even though the Chinese remedies didnâ€™t help as much as I hoped, neither did the Western therapies. What confused me is why the Eastern and Western therapies I tried felt so disconnected from each other. Chinese doctors didnâ€™t seem to trust Western medicine, and vice versa. As a result, I often second- guessed my treatment decisions.
Today I mostly depend on Western medicine, although I am still open to traditional Chinese approaches. As a Chinese American I feel I can draw from both. My hope is that my healthcare providers can also value how these methods, and potentially others, might work together to treat my psoriasis.
Coping With Mental Health Issues and Stigma
From those stories I better understood why my dad may not have had the tools to adequately address the emotional turmoil I felt living with psoriasis. He survived by setting goals, working hard, and looking to make a better life for his family. But I couldnâ€™t cope the same way.
My psoriasis has triggered considerable emotional pain. I poorly managed feelings of insecurity and inadequacy for many years. As a teen and young adult, I directed my anger toward my parents for not supporting me through those tumultuous years.
Later, I came to better comprehend their life struggles and not to place blame. Still, I lacked role models and examples of how to cope with my negative emotions. The lack of emotional support and awareness led me to depressive, negative thinking and, at times, suicidal thoughts. When my psoriasis flared I struggled to manage my emotions. Angry outbursts or emotional withdrawal often ensued.
I didnâ€™t know where to get help. I was raised to not share my true feelings and my doctors didnâ€™t ask or have time to care for my emotional health. For a long time, I was frozen emotionally and didnâ€™t realize it. I began to heal emotionally only as I grew in my faith and broke my silence to others, especially my wife, about my struggles with psoriasis.
Going to a therapist for a few months stands as one of the most difficult (and best) decisions I made for my mental health. While I felt like I let my family down by being too weak to overcome my pain, I needed to root out deeper anguish and shame and address my lingering anger issues, which my therapist helped me to do.
Iâ€™m also grateful for research and growing awareness of mental health concerns for those with conditions like psoriasis and eczema. My hope is that the psoriasis community and healthcare providers will likewise recognize the unique cultural challenges that Asian Americans may face with chronic illness and mental health.
Helping My Parents Advocate for Themselves
My parents have lived in the United States for 55 years, yet they still watch Chinese television, shop in Chinese grocery stores, and eat Chinese food every day. They can function in English in most situations, but their cultural and language background can become hindrances to receiving the best healthcare.
So when both my parents received psoriasis diagnoses in their seventies, they reacted as their Chinese background predisposed them to: They followed their doctorsâ€™ advice without question. Nothing wrong with trusting the doctor. But this attitude can keep them from asking for information they may need and learning about treatment options for themselves.
Iâ€™m glad I could help my dad navigate the healthcare system. He would forward messages from his dermatologist, and we would discuss terms he didnâ€™t understand and next steps in his treatment. Iâ€™m convinced that without help, his deference to doctors would have led to a worse health outcome.
Becoming the Person I Am
Growing up with psoriasis as a Chinese American was hard, but it helped me become an advocate for my parents. And surprisingly, it also offered moments of joy that will stay with me forever.
When I think about those dreaded visits to Chinatown for medicinal herbs, for instance, I also recall stopping at Portsmouth Square, a small city park above the underground lot where my parents like to park the car. Before heading home, my parents would always let me have some time in the playground. I remember gleefully climbing the play structure before sliding down to the sand pit below.
Psoriasis changed that Asian American childâ€™s life immeasurably â€” and helped him become the person he is today.
You can read more about my experiences in my blog for ishonest and on my website.
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