Gwendolyn’s wife has lupus and other related diagnoses, and Gwendolyn has been caring for her for the past ten years. Neither Gwendolyn nor her wife have received many resources or much information on the disease, and Gwendolyn herself is rarely recognized as the care partner or given information specific to her role.
Unfortunately doctors have been dismissive of the symptoms Gwendolyn’s wife has experienced before, claiming they are “typical” for an African American woman. Gwendolyn has had to constantly advocate to make sure her wife gets the care she needs, and that the information they need has been given to them, but after a while, it becomes tiring to constantly chase down responses. Much of the time, Gwendolyn’s wife grins and bears the pain, and Gwendolyn helps her through it.
Dealing with a diagnosis such as lupus can be isolating, and Gwendolyn would appreciate having more information about the disease and connecting with others experiencing it. Currently, she learns what she needs by attending doctor’s appointments; she has never been connected to a patient advocacy group. However after learning about them, she thinks patient advocacy groups could be helpful in following up with caregivers, providing more research and information on certain diseases and how they affect the Black and Brown community, and providing supports and resources on self-care for care partners. If patient advocacy groups were to put information about what they offered in healthcare settings, she believes they would be easier to find.
There can be a level of distrust between the Black and Brown community and the healthcare system, and Gwendolyn believes that above all else needs to be worked on. Those from the community who already work in healthcare need to be given a voice and leadership positions to begin to make change, and the system itself needs to be educated and demonstrate growth in how they understand and interact with Black and Brown people.