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Lost in Translation

Feb/03/2024 / by elizabeth-marglin

Why South Asian women face an uphill battle finding quality healthcare—and five ways to advocate for yourself.

From awkward silences to drastic misdiagnoses, many South Asian women have bumped up against the limits of a healthcare system not built with their needs, backgrounds or bodies in mind. Navigating health literacy, cultural stigma, and doctors untrained to recognize higher baseline risks can be an exhausting endeavor, and one that requires persistence and self-advocacy.

It’s challenging enough for South Asian women to seek out quality care in the first place. “Women of Indian descent in the U.S. carry a sense of shame when it comes to any health conditions or needing to seek attention,” says Shruthi Mahalingaiah, Assistant Professor of Environmental Reproductive and Women’s Health at Harvard T.H. Chan School of Public Health in Massachusetts. “That might be within the cultural context of the concept that the woman is there to serve the family, the husband, the children.”

Figuring out how to get intelligent, informed care, in a system which has become increasingly digitized, is a herculean project for even tech savvy native English speakers. But for those not fluent in English, with different customs and restricted by various stigmas, the ability to find the right place for their own problems is daunting. Given the frustration involved, it’s no wonder that what might seem like the sanest choice is to stay away from doctors altogether.

Yet obstacles to healthcare can and must be overcome. Although the barriers to access include inadequate cultural understanding, poor communication, limited social support, costs of care, lack of awareness about available services, and limited health education, there are ways to befriend the system and benefit from it.

So how do you find the right care at the right time at the right place? Here are five strategies for learning how to take your health into your own hands—and get the kind of care you deserve.

1. KNOW YOUR RISKS

South Asians are predisposed to getting cardiometabolic syndrome, says Dr. Rachna Saxena, MBBS, DCH, MPH, and Deputy Director of Public Health Policy & Strategy in Lackawanna County, Department of Health, in Pennsylvania. In India, cardiovascular disease remains the leading cause of death. A growing body of research suggests that South Asians develop heart disease 10 years earlier, on average, than other groups. A stunning 50 percent of South Asians will have heart attacks before the age of fifty, and 25 percent of heart attacks occur under age 40 for young South Asians. These are statistics worth noting. Cardiometabolic syndrome includes a cluster of conditions, such as high blood pressure, high blood sugar levels, excess body fat around the waist, and abnormal cholesterol levels.

But diagnosis can be tricky. Take being overweight, as in body mass index (BMI). There is growing evidence that Asian Americans develop diabetes at lower BMI levels than other racial/ethnic groups. Asian Americans may not be considered overweight by American standards, but they carry more of their weight in their abdomen. This concentrated, visceral fat is more likely to lead to a cardiovascular event. The World Health Organization recommends using lower BMI intervention thresholds, 23 versus the standard 25, for Asians to identify those with a weight-related risk for cardiometabolic disorders. If you didn’t know this, you might not realize how big your cardiovascular risk is. Hint: Your doctor may not realize it either.

TRY: One of your most important jobs is to propose to your doctor that as a South Asian between the ages of 20 to 60, you should be screened for cardiovascular risk factors. That way, anything suspect can be identified and treated before heart disease sets in.

2. MIND HOW MENTAL HEALTH PRESENTS PHYSICALLY

Mental health issues can present as physical symptoms, and the phenomenon is more common than you would think, especially because South Asian culture sometimes stigmatizes mental health concerns. As an unconscious workaround, South Asian Americans can somaticize psychological distress as physical symptoms, such as anxiety presenting as indigestion, poor appetite, and heart palpitations. Or, as Saxena puts it, “You may feel tired all the time because you are actually depressed.” South Asians may be more comfortable seeking treatment for physical ailments rather than for underlying psychological issues.

The pressures to maintain model minority status are intense; in fact, that pressure causes a debilitating internalized disconnect. The familiar “log kya kahenge?” The pressures to maintain model minority status are intense; in fact, that pressure causes a debilitating internalized disconnect. The familiar “log kya kahenge?” meaning “What will people say?” is a vehicle of repression, a way to shame actions or words that do not align with the cultural norms of the South Asian community. “Family and friends might tell you to get over it,” says Saxena, “but you cannot simply get over it.” TRY: If you have difficulty recognizing and expressing emotions, you may be a prime candidate for a somatic disorder. Experiment with deepening your emotional intelligence by accepting whatever emotion is arising in you, even rage or grief. If this assignment seems a titch threatening, you might want to investigate therapy or counseling as a more conducive environment for this kind of exploration.

3. BE VOCAL AND PERSISTENT

South Asian women are not always taught how to get their medical needs known and therefore met. The major contributors that hinder getting help among Asian American women are feelings of shame, stigmatization, an unwillingness to burden others, sense of failure, and misconceptions about causes.

On the other hand, some South Asians are accused of taking up too much space. One study based in England showed that doctors perceive their South Asian patients to need longer consultations, be less compliant, and make excessive and inappropriate use of health services. Also in England, there is a racist and sexist stereotype called “Mrs. Bibi syndrome”, which describes a make-believe syndrome where an elderly, [non-English speaking] South Asian woman exaggerates her health complaints despite having minimal signs of ill health. Confronted with medical racism and gender bias all across the spectrum, it can be very hard to find your voice and have it heard.

TRY: The more specific you can be about your health concerns, the better, says Saxena. “You have to explain what is going on, not just saying pain.” Saxena also
suggests bringing your documents with you to doctor’s appointments, along with planning your questions in advance. Ask questions. Inquire about treatment
options. In addition to seeing a medical professional, you can also seek advice or help from a family member or friend who works in health care, or from others who
have a similar health condition as you.

4. CURATE CLEAR COMMUNICATION CHANNELS

Mary Archana Fernandez, LMSW, the director of Family Support Services at the South Asian Council for Social Service (SACSS) based in Flushing, NY, says together the staff of her organization speaks 19 languages. “The language piece is crucial for healthcare. Very often there are women with very little formal education who may not even be able to read or write. The healthcare system in America is much more complex than what they might be facing in Asia.” Many of the people she works with don’t even know that they have the right to an interpreter. Given the number of languages and dialects, getting an accurate translator may prove to be difficult. Yet the communication piece is essential, as it forms the basis of trust between doctor and patient, helps the clear exchange of information, and supports making
informed treatment related decisions that patients will feel motivated to adhere to.

TRY: Make sure you understand what your doctor is saying to you. If you can, take along a friend or family member who can help ask clarifying questions, especially if you are dealing with a major issue. As tempting as it may be, don’t rely on your child for this. Asking children to serve as ad hoc interpreters for patients with limited English proficiency is both harmful to your outcome and unfair to the child.
Repeat back to the doctor what you have understood about the plan for your treatment to make sure you’re on the same page.

5. SEEK OUT CULTURALLY COMPETENT PROVIDERS

There is a growing movement amongst healthcare networks to train their doctors in cultural competency. For example, in 2020 the Cigna Group launched new initiatives aimed explicitly at the South Asian community. Doctors familiar with dietary norms in Indian cooking, religious observances such as fasting and how that might impact health, and lifestyle norms are more likely to be trusted. Don’t settle for a doctor
dismissive of cultural differences; seek out a doctor who can treat differences as strengths that can be leveraged to design an effective treatment plan (for help finding one, see the sidebar “Doctor Diligence”).

Ultimately, says Fernandez, “even if your providers don’t have cultural competency, they can aim for cultural humility.” Cultural humility means understanding the complex nature of identity—where we as humans are similar and where there is difference. A clinician can never be fully competent about the dynamic nature of
a patient’s experiences; it is an ongoing exploration. It means recognizing that all South Asians are not the same. It means “treating each patient as human, listening with interest and curiosity, and being willing to learn from their patients,” says Fernandez.

TRY: Express your beliefs and values as they pertain to healthcare. If you feel certain foods are important traditions, ask for help with modifications. Discuss your expectations and how your health concerns and religious beliefs might intersect. Be willing to share your lifestyle practices and how you might adjust them to be more aligned with your health focus. To get a personalized, empathetic response, you might have to take the risk of getting a little personal with your doctor.

DOCTOR DILIGENCE

Finding a healthcare provider who understands your cultural background and values can make a huge difference in the quality of care you receive. But finding them can be challenging in the least. Here are a few steps that can help.

→ Ask friends, family members, and community organizations for recommendations of doctors with experience treating South Asian patients.
→ Find health systems that have built programs and research specifically around the South Asian community, like Stanford and the University of California.
→ Check credentials, hospital affiliations, and bios to look for indicators of cultural competency such as studying/working experience in South Asia, languages spoken,
community service and outreach.
→ Ask prospective doctors directly about their experience with and approach to treating South Asian patients. A culturally sensitive provider will welcome this question.
→ During appointments, clearly communicate your beliefs, values and expectations
upfront to assess if your outlooks align. Over time, determine if your provider listens without judgment, answers all questions, and involves you in customized treatment plans.

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