Editor’s Note: Denise Coley is a Parkinson's policy, health equity and awareness advocate, a co-founder of the organization Special Interest Group Black Diaspora, one of many co-authors of The PD Movers: We Keep Moving and a Patient Council member of The Michael J. Fox Foundation.
Every person living with Parkinson’s disease (PD) has their own unique symptoms and journey. They may also have many different perspectives on navigating the disease as best as possible while encountering racial bias, perception and stigma. The health care professional and person with PD might have their own biases. My focus will be getting the best services for my body for life’s journey.
Recently as I binged watched basketball on TV, everything from High School to NBA and WNBA, it was clear, to perform at your best, athletes need to care for their body and keep it in shape.
I have found that many people of color with PD remark that they treat the initial visit with a health care provider as an interview. Perhaps, one of the most important questions to answer starts with: “Is there a good match between the person with PD and health care provider?”
Others stated they want the health care provider to listen, understand the person in front of them, communicate how they will provide the help needed to fulfill the mutual goals and challenges that need to be addressed.
When confronted with racial bias, stigma and misperceptions in the health care setting, you might feel alone in a mistaken reality, be fearful or confused. For example, hearing the following scenarios:
- “You seem to be angry all the time” (Answer: Facial masking or hypomimia)
- “Don’t think young black men get PD”. (Answer: PD affects ALL people and families: age, race, ethnicity, socioeconomic status, sexuality, etc.)
- “You don’t fit the textbook example of PD” (Answer: Illustration. This newly developed image is a more accurate reflection of the broad diversity of people with PD.)
- “See you at our next visit” without providing an offer of resources, support, or working together (Answer: Consider selecting another health care professional.)
I chose to connect and engage the health care provider across the table from me, as a person and expect the same from them. Each of us needs to be respected. We are brought together to communicate for understanding, focus on shared goals and challenges that need to be addressed. If this is understood and acknowledged, then we can follow the steps below to begin gaining a trusting relationship needed for success. Be aware of possible racial bias, stigma and misperceptions and address them as needed when going through the four steps if necessary.
The process I use for health care provider appointments is first, CONNECT. Introduce myself and my care partner, make sure to look them in the eyes, and shake their hands. Do they look at you, provide eye contact, and acknowledge you and those who accompany you? Do they ask how you are? Take time to get to know each other.
Second, does your health care provider LISTEN to your questions, goals, and challenges. Do they care? Do you reach a mutual understanding and communication?
Third, PREPARE for the meeting. Do your homework. Come prepared with questions, and feedback since your last visit and communicate. If possible, touch base between meetings.
Fourth, COMMUNICATE, listen to each other, establish mutual treatment goals. Do you feel compassion, empathy, and understanding between each other?
Like anything in life, success is establishing reciprocal trust. When it comes to managing Parkinson’s disease as someone who identifies as a person of color, the same is true. If this health care provider doesn’t go along with your efforts, it is okay to move to another health care provider and go through the same four step process, where possible.
Looking for more on this topic? Hear from Denise and other experts on navigating racial bias and stigma in Parkinson’s disease on MJFF’s podcast. And read more from Denise in her co-authored illustrated storybook, The PD Movers: We Keep Moving, a compilation of narratives of African American and Black individuals and caregivers who are living and thriving with Parkinson’s disease.