Keep On Truckin'
As I read the paper "Experiences of African American Women with Multiple Sclerosis" I caught myself nodding in agreement with most of the findings. As an African American woman living with multiple sclerosis, I have made it point to read new research and advocate for more Black people in research, clinical and otherwise. I want to know as much as possible for myself and my fellow MS travelers of color. I felt a connection with some of the women because of their views.
There were three common threads in the analyses. African American women with MS are slightly incredulous at their diagnosis, life with MS is hard, and that one has to keep going. All of these struck a chord in my own life.1
Experiences of Black women and MS diagnoses
As I have written about previously, my MS diagnosis was completely out of the blue. Out of the blue as in walking in the emergency room with a nosebleed follow up and leaving with multiple sclerosis 2 and 1/2 hours later. Many of the women in the survey had the same experience. While mine was due to a lack of obvious symptoms, their experiences had to do with failures in the medical system.1
Since it was first discovered, until recently, MS was considered a Caucasian disease. In particular, young white women were believed to be most at risk. For Black women, this assumption lead to a later diagnosis which allowed the disease to progress further with no medical interventions. Black women slide more quickly into secondary progressive MS than any other group. Social determinants of health are also responsible. Access to healthcare is a continuing issue for the Black community. Lack of access means less of a chance for an early MS diagnosis and for consistent healthcare.1
The impact of racial inequality
Multiple sclerosis is hard on us all. We can share our battle scars with one another, knowing that we will be understood and our troubles appreciated. With that being said, the extra layer of racial inequality has an added impact. Job insecurity is one of the problems encountered more by Black people living with multiple sclerosis than white counterparts.1
My diagnosis came just as I had started my consulting business. I was proudly in possession of two graduate degrees and I was ready to roll. I wasn't affected initially or so I thought. The stress of finding out I had MS probably led to an exacerbation that knocked me out for over two months with extreme fatigue and pain. I was pissed off that the experience and education I worked so hard to achieve would be moot. The keys to success that would help me overcome the misogynoir, the intersection of race and gender, of our society was seemingly gone. These women had the same experiences. I was in good company.
Black women are stereotyped as being strong. No matter the circumstances or the pain, we are painted as people with backbones and shoulders that can carry any burden. It is an unfair characterization that leaves no room for our humanity. That is where this last commonality is a bit of a bitter pill because the mantra of Black women living with MS is to bear the burden. We keep it moving with grace and a shake of the head. Maybe it is like adding a new wardrobe to the laundry basket. What makes me feel heartened is that there is an awakening that it is not necessary to be strong all of the time. As one participant was quoted, "It’s something that's ingrained in the culture. I don't know, some deep-rooted pride I was like, 'no, ask for help.' There’s nothing wrong with that. It’s worse if you just suffer quietly."2
Finding solace in commonalities
The entire journal article was like a comforting blanket on a cold day. To read these other experiences and see myself in them was nice. I am from a state that has a very low African-American population and locating other Black women with MS is a challenge. It is lonely at times because of that extra layer of culture and marginalization. It is not that I do not have Black women living with MS in my intimate circle. It is that there are fewer opportunities to be among my people. I am comforted knowing that my feelings are shared outside of my circle into a greater community. If you are a Black woman living with multiple sclerosis, I urge you to read the journal article. It may be as affirming to you as it was to me.
Have you ever heard someone say the following: