By Sydney Barned, MD, as told to Kara Mayer Robinson
I’m a 40-year-old doctor based in Annapolis, MD. About 7 years ago, my life took a profound turn. I went from thinking I was a healthy adult to being diagnosed with inoperable stage IV lung cancer.
I was 33 years old at the time, living in Washington, DC, in the middle of a medical internship on my way to becoming an internal medicine hospitalist, which is a doctor that works inside a hospital.
I’d already had treatment for an abnormality in my left lung. But I was having new symptoms, like persistent wheezing, so I went to the hospital right away.
They gave me tests and X-rays. Since I’m a doctor, I examined the X-rays myself. They looked normal, but after I read the report I realized something more could be going on, so I requested a chest CT scan.
Fortunately, my health care provider listened to my concerns and agreed to do the chest CT. It showed a mass. My pulmonologist, who happened to be a fellow Black female, acted fast and arranged for more tests. Within about a month, I had a diagnosis of stage IV lung cancer. I then started treatment with targeted therapy.
Navigating Disparities in Health Care as a Person of Color
I was fortunate to get a diagnosis and treatment very quickly. But this is not the typical experience for patients of color with lung cancer.
People of color like me sometimes have experiences of discrimination in health care, which often leads to a distrust of the health care system. In fact, studies have shown that health care providers may deliver less effective care to people of color, even when controlling for various socioeconomic factors.
I was fortunate to have health insurance, health literacy, trust in the health care system, access to a specialty medical center, and providers with minimal bias. I also had the privilege of being a physician, which most likely played a role in speeding up my diagnosis and treatment.
Education and Self-Advocacy
I was able to self-advocate from the start, which was essential, especially as a person of color. I did online research to have a better understanding of my condition and my treatment options.
It’s important to educate yourself about lung cancer. Seek out reliable online information. Talk to your medical team. Lung cancer is often misunderstood. Many people think it only affects smokers. There’s also a lack of awareness about lung cancer screening and eligibility.
I believe self-education can help people of color navigate the health care system, overcome potential bias, and ensure equal, culturally competent care.
My Emotional, Social, and Financial Challenges
For me, the biggest challenges have been financial, emotional, and social in nature.
Financial challenges
When I was diagnosed, taking time off from work was a luxury I couldn’t afford. I was ineligible for medical leave and disability, which left me with no choice but to keep working throughout my treatments. I had to put aside my own health fears and concerns while caring for my patients, which wasn’t easy.
I know I’m not alone in this. Many patients of color face similar decisions. Either they work through treatments to make ends meet or they face dire financial consequences. The positive side of keeping a regular work schedule was that it gave me a sense of normalcy and control over my daily life, which was very comforting.
Emotional challenges
I’ve also had emotional challenges. When I was diagnosed, I was a 33-year-old with dreams and milestones I hoped to achieve. When I found out I’d likely never be able to have children because of the effects of my medication, it added to the uncertainty of my future. My carefully laid plans suddenly felt hazy, with questions about whether I’d even be around to fulfill them.
I joined online support groups and connected with fellow patients who were facing similar challenges. They shared valuable insights based on their own experiences, which helped. I also prioritized my physical well-being. I worked out regularly and did activities I enjoyed, like taking dance classes in the city. It was essential for both my physical and emotional well-being.
Social challenges
When I was diagnosed, I had just moved to Washington, DC. I was in a long-distance relationship with my soon-to-be-husband and I didn’t yet have an established circle of friends. I was also far away from close family. My nearest relative was an hour and a half away by train.
But even though most of my support network was far away, they helped me in many ways.
My now-husband provided vital moral support. He’s been by my side every step of the way, from accompanying me to appointments and helping me maintain healthy habits. My family members were able to fly in for key moments. My friends checked in on me and made sure I didn’t dwell too much on my cancer diagnosis.
My residency colleagues also rallied behind me. They were incredibly understanding and respectful of my need for normalcy and made accommodations for my follow-ups. My support network has been invaluable.
Hope for the Future
I’m hopeful about my continued positive response to medications, which has allowed me to have an excellent quality of life. I’m also hopeful that my advocacy efforts to spread awareness through organizations like the Lung Cancer Foundation of America will contribute to positive changes in the future for people with lung cancer who follow in my footsteps.
Navigating the health care system during a lung cancer diagnosis can be a formidable journey, particularly for people of color. My experience is a testament to the power of self-advocacy, knowledge, and a robust support system.
I hope that by sharing my story, we will keep raising awareness about these challenges and work together to address health care disparities, improve outcomes, and ensure equal care for everyone.
Show Sources
Photo Credit: E+/Getty Images
SOURCES:
Sydney Barned, MD, internist, Anne Arundel Medical Center, Annapolis, MD.
American Lung Association: “Racial and Ethnic Disparities.”
