My Cancer Crisis! How Mistrust of the Medical System and Poor Insurance Coverage Forced Me to Clarify My Purpose as a Black Immigrant Woman
By Claire Jones
‘There are a number of ways to design a health care system so that everyone gets the care they need, and even have it be cheaper and with better results compared to our current system.” — Jonathan D. Walker, M.D. pnhp.org
Our mission at Sista Creatives Rising is: “To help marginalized women and marginalized genders gain accessibility and visibility in the arts to facilitate personal healing.” Amaranthia suffered at the hands of bullies from a young age, and Claire was born into domestic violence in Barbados. They both found that art helped them heal and are determined to make a difference in the lives of marginalized women like themselves.
Some Context
In late 2021 I noticed a marked change in how I felt. I grew tired quickly, took naps for hours during the day, and experienced weird symptoms I attributed to menopause. Soon I could not eat anything with citric acid or high amounts of histamines — most foods contain both.
I had not received my regular cancer checks for 2019 due to the pandemic, and because I was worried about the cost since my insurance coverage deductible was high. There was a period when there was no coverage. Instead of going to the doctor, I kept putting it off because the stress of the impending bills was a huge factor, as well as my mistrust of the medical system.
A January 2021 article titled “Understanding and Ameliorating Medical Mistrust Among Black Americans” at commonwealthfund.org gave me much-needed insight into the healthcare system.
“Laura Bogart, Ph.D., a social psychologist and senior behavioral scientist at the RAND Corporation whose research has documented the effects of medical mistrust on HIV prevention and treatment outcomes, defines medical mistrust as an absence of trust that health care providers and organizations genuinely care for patients’ interests, are honest, practice confidentiality, and have the competence to produce the best possible results.”
The article helped me understand how living in America as an immigrant affected my way of thinking regarding the healthcare system. I never worried about healthcare in Barbados because public healthcare is free and private healthcare is available to those who can afford to pay.
Confronting Crisis With Determination
I faced many overwhelming and traumatic challenges in my life, but my biggest challenge was last year, starting in mid-March. I suddenly lost my mobility over the space of six days and ended up in emergency surgery for a massive growth, wrapped around like a donut, on my upper spine. I was losing mobility by the hour. The doctors told me I had a 50% chance of paralysis, but I surprised them when my legs moved shortly after surgery. I am in the rare one percent to walk again after such surgery. This experience gave me clarity of purpose and the courage to implement my mission.
The vision was born very young when I was growing up under domestic violence in Barbados. I decided at a young age that I wanted to become a well-known writer to share my story and help lift my mother out of the life of ‘lack’ fostered upon her by the conditions created through the violence.
My journey to discovering I had cancer was unfortunate. In 2015 I learned I had a marker for multiple myeloma, a rare blood cancer. I was devastated and immediately went into a preventative mode with the help of my daughter Amaranthia. Together, we worked on every level of my psyche. With the help of my Buddhist faith, we understood that this was not happening in a vacuum. We believe many mitigating factors brought me to this moment. They included many bad and unhealthy choices, buffeted by Intergenerational factors of inherited stress and deeply ingrained resentments. Understanding this, I focused on fighting to push back this diagnosis.
Reality Check
Fast forward to that frightening week in March 2022 when I gradually lost my mobility ending in hospitalization.
On the day of my hospitalization, I sat on a closed toilet in my guest room. I stayed from four until seven in the morning. After getting up to use the bathroom, I was forced to drag myself across the floor. I knew I was in trouble as the cold crept up my legs and torso. However, I let three hours go by because of my worries.
“BIPOC individuals are speaking out more and more about their medical emergencies where they have been treated unfairly, invalidated, and degraded. This treatment can have dangerous consequences, as many minorities, especially black people, already feel immense distrust towards medical practitioners.” Disparities in Medical Care…”, planned parenthood.org
Growing up in Barbados, I saw doctors and nurses who looked like me and understood my body and how illness presented itself in a person of color like myself. However, visiting doctors in the US was always an eye-opening and stressful experience. Most were white, and I never felt comfortable expressing my feelings. Today my primary care doctor is a woman of color, which has helped.
“Black Americans make up 13% of the U.S. population, but only 4% of U.S. doctors and less than 7% of U.S. medical students. Research has found that people of color are more than four times as likely to receive care from physicians of color.” “Do You Trust Your Doctor?” Medium.com
Refocusing and Some Thoughts
The week in March 2022, which led to my hospitalization with a massive growth on my spine (large B-cell lymphoma), resulted from many factors, some of which I will never know. However, my lack of trust and choices caused the situation to worsen. Sadly, being worried about the cost and whether I would meet doctors in this majority-white northeastern state with the cultural competence to handle such a complicated case presenting in a Black, Bajan, immigrant woman hampered my timely care. I believe these choices almost cost me my mobility. In the end, serendipitously, I was cared for by men and women whose professionalism and understanding saved my life. Thankfully, as a result, I am now in the rare one percent to walk again after such surgery.
Lying in the hospital, I had lots of time to reflect, think, and plan. I decided to put my long-awaited vision of wanting to help marginalized women-identified/femmes-expressing creatives to heal through art. As I came through the medical system, I found writing an online journal about my situation helped. It made sense to me that sharing this story through creative means, once I got back on my feet, could significantly help women like myself. There was no time to waste in getting out this message, via my story, about the importance of accessibility to coverage and healing through art for marginalized women
My advice? Get ahead of life before life gets ahead of you. Listen to what your body tells you and seek help if needed. In the end, worrying about money, and doctors that look like you, cannot save you if the situation is critical. Yes, these factors are fundamental and need addressing urgently, but in the end, save your life and let the chips fall where they may. Sometimes letting go with trust is the only solution when all else falters.
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☀️🌻Stay safe and protected in your brilliant light🌻☀️
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