By: Delphine Gervais, LCSW
This May will mark five years since my mom was “officially” diagnosed with stage 4 breast cancer and two years since she transitioned. There were plenty of days that I replayed the rush to the hospital, the exposure of her upper body to the doctors, the shock at what I saw. I remember the doctor questioning my mother, “When did you feel the first lump?” I remember hearing my mother respond, “four years ago”. (hence my reference to the word “official”). My mother was a resourceful Haitian woman, who never missed a doctor’s appointment and who never missed out on an opportunity to eat healthy. Olive oil was a staple in our home. Processed food was not. She did everything she knew how to live a fit life. In her mind, that lump negated every effort, and it was then that her life completely changed.
For the purpose of conversation, I opt to turn my lense to black women and what their attitudes towards receiving services imply for their ultimate well being. The stats are not favorable for communities of color. Heart disease, cancer, hypertension, mental health–people of color lag behind in prevention and are dying at faster rates for lack of both prevention and intervention services. In the case of breast cancer, although screenings among black women tend to be on level with those of their white counterparts, follow-ups for negative results were much lower. Death rates among black women are 42% higher than their white counterparts. It is one thing to schedule and conduct one’s mammogram every year. Everyone can do that. It’s another thing to follow up after receiving some not so favorable results.
I didn’t believe my mother loved me and my brother less because she didn’t seek the help she needed. It couldn’t have been an easy pill to swallow to suffer in silence. Help seeking behaviors among African-American and Afro-Caribbean women have historically been a point of concern among those in the health profession. The cultural construct surrounding help seeking behavior for physical or mental health concerns boils down to “it’s nobody’s business but mine.” If you couple that with the religious and spiritual impact on decision-making and you likely have a woman who will keep secrets from her loved ones and bear the entire emotional burden of disease. To say that women of color reject the notion of prevention or intervention services is a fallacy. It is best to first understand that normalizing health seeking behavior is the first order of business.
Imagine walking into a space where medical jargon is thrown at you left and right. Machines are beeping. People hurry about their work day, some stay long enough to inquire as to your well-being, while others just come long enough to poke and prod and leave with nary a word. A person who speaks the king’s English would have a hard time navigating the health system. A person who speaks limited or no English would drown in fear and embarrassment. There is also the matter of inequitable access to services in the communities of color. Are clinics within walking distance or near a bus stop? Do those who provide services understand the complexities of a person of color coming to their spaces in search for help? Are they immediately placed at ease? Are there people present in these spaces who can walk among the emotional minefields of their patient’s mind?
I remembered offering to take my mother to a cancer support group comprised of Haitian women. The social worker in me thought it would be best for her to be among others who were grappling with similar issues. She gave me a blank stare and a firm “No”. I never brought it up again. At times, we professionals believe we know what’s best for those who need help. Imposing our norms and expectations lessens the opportunity for the person to establish personal ownership of their circumstances. They’ve heard about the church member who became ill, went to the hospital and never came back home. Walking into foreign spaces and experiencing a new normal is difficult for the average human being. Being a woman of color compounds those feelings of helplessness. When the strong black woman mystique had been challenged and the figurative “S” was off her chest, my mother didn’t want a support group. Attendance at weekly church services was support enough.
There cannot be a one size fits all approach to healthcare. My mother’s doctor knew well enough not to say the big “C” word in sessions. She was delicate and respectful in her approach, she maintained deference in her tone and she left the hard discussions during one-on-ones with me. At times she would practice her Creole on my mom. This would make my mom smile. The feeble attempts at seeking commonality met with ultimate respect. For my mom that was enough to keep her committed to returning every month. Even when the blood work started coming back with less than positive news, she kept her appointments without fail. Being seen by doctors and nurses who knew her name and smiled with their eyes made the trips that much bearable. Half the battle is won when communities of color are provided with opportunities to maintain their personal dignity while seeking the help they so very much deserve and need.
This is not a mandate to learn a new language or join Doctors Without Borders. It is however a call to action for professionals in the healing arts to take stock of how they approach their patients of color. What works for Jane Doe may not work for Marie Pierre and Mary Johnson. Cultural norms play a big part in how they each approach seeking help. Knowing Jane’s cultural constructs and not Marie/Mary’s should cause one to pause and assess their effectiveness in providing service. As the Haitian daughter of a Haitian woman I thought I knew all there was to making sure my mom received the services she needed. My westernized approach to therapeutic intervention failed miserably. I should have known that my mother cared less about support groups than ensuring she had a nurse aid to provide meals. She cared less about the blood work coming back negative and more about when the bus would come to take her to her prayer service. It didn’t take me long to stop hitting my head against the proverbial wall. It was less of what I wanted and more about what she needed. Once I made peace with that, it was smooth sailing.
Delphine is a licensed clinical social worker with experience in education, health, social welfare, community development, and individual/family/group intervention services. Her professional background emphasizes a special focus on community involvement and service; utilizing social networking for the purpose of bridging the gap between those with established needs and those with access to the resources to meet those needs. Read more on her blog.
Source: American Cancer Society http://www.cancer.org/