Monday, June 8, 2020

Black People and MS - an interview of learning with Myelin and Melanin Podcast Ladies

this is Eliz. I must offer an apology. I chatted with Dawn and Daana about this subject back in late February, early March. Just as I went to go to share, Covid19 was peaking, and I was starting to advance in my own health journey. So I asked Dawn and Daana if we could pause on release. And then honestly, I forgot about it. Till recent events of racial justice started to have to learn and question again. And then it was like, OMG!! Dawn and Daana! Their insight!! To me, it was just putting off an interview. But what I was putting off was the dignity that is owed to these two beautiful Black ladies' story and MS journeys and their work within this space. They live this life every day - there is no "putting it off" for them. Dawn and Daana, I'm sorry I didnt see that till now. To all my other social media Black friends, I'm sorry I didnt share this sooner. I promise to continue to learn and evolve my perspective. Much love, Eliz

So to start, Dawn, Daana, would you mind telling us a little about your MS health journey?

Dawn: I was diagnosed at the age of 25 with RRMS May 23rd, 2000. My initial symptoms were extreme fatigue, numbness & tingling in my extremities, muscle weakness, Lehermitte’s Sign (electric shock sensation that some MS patients experience when lowering their chin to their chest), and my right leg would constantly drag as I walked.

No one in my family has MS or had a major illness so naturally it was a complete shock when everything began happening. For about 9 years it seemed as if MS remained quiet. Some days I would even ask myself, do I really have this disease? In 2009 after a tremendous amount of stress, I had an exacerbation that completely turned my life upside down. The course of my illness woke me up, if you will and was no longer quiet. It pretty much laughed at me then said I’m here to stay.

Daana: I was diagnosed with RRMS in 2004; my presenting symptom was optic neuritis. I was relatively asymptomatic for about 10 years, but stress and life took a dramatic turn for me.

From there, some of my physical symptoms progressed quite a bit. I walked unassisted until about 2014, and now use a wheelchair full-time. I only bring this up, because people are obsessed with mobility and ambulatory status. It's kind of gross, but…

A side note -- my mother has MS and her sister, my aunt, does as well. My DMTs have ranged from Avonex to Tysabri to LEMTRADA, and now, Ocrevus.

How did you two meet and decide to do your podcast “myelin&melanin”?

We met online! My neurologist and I were discussing a new medication (LEMTRADA). She recommended I join the Lem Facebook group to familiarize myself with others and speak with them about this newer therapy. I believe she noticed the look of terror on my face, which is why she placed emphasis on joining.

I’m glad that I did because Daana and I probably would never know one another. This was my round one, year one LEMTRADA journey (Daana’s year two).

Honestly, I was so reluctant, angry, & scared about this DMT. I would stay up late reading various posts, and I would see Daana’s comments quite a bit. I thought, ok here is a woman that is very similar to me! She’s witty and isn’t afraid to say what’s on her mind! I think there were several posts we commented on and I knew that we were a mini tribe inside of a larger one. I was unaware that she and I were individually documenting our journey.

Then one day I said in an email, “HEY let’s start a podcast.” Daana answered with reluctance and pretty much said, “no I’m NOT ready or interested at the moment.” I understood because when we initially began chatting she asked me not to say anything about MS on her personal page. I respected that and backed away for a year. In late 2017, Daana said, “ok I’m ready”.

As a Black person newly diagnosed with MS, could you find someone who “looked like you”, something we ALL crave? How did that make you feel? Where most is this issue lacking?

Great question! No, I did not see anyone that looked like me when I was diagnosed. The only people I noticed were Richard Pryor and Montel Williams. Two black men that seemed far removed from the things I faced. The lack of representation made me feel terribly lonely. Of course no one intentionally set out to isolate this young black girl with MS, however, this is exactly how I felt.

Eventually I joined an MS Society support group and met women that “looked like me” but were older and further along in their disease. But again, this was 2000; the method of communicating was quite different. Being able to connect with others in my age group seemed like a dream. Honestly, I didn’t meet a black woman in my age group until two years after my diagnosis.

Dawn and I were diagnosed with MS a long time ago (in the age of ABC drugs) -- way before social media really became "a thing". That being said, there was essentially no Black representation of people with MS. There was Richard Pryor (who wasn't really visible in the MS community) and then we have "the default" -- Montel Williams (that's another story; I think the lack of representation especially as it relates to black men with MS is what inspired us to do our "Beyond Montel: Black Men and MS" series last season 2). So no, there was no place that you could really look and find people who look like us with MS community. Especially as Black women in our early 20s.

While representation is still severely and painfully limited I think the representation of Black people that we do see are people who are relatively new and their diagnoses, and whose diseases are relatively quiet. That can be problematic, because it silences the voices of people who have stories that might be scary or not is palatable to people. We need to be acknowledging the stories of all Black people with MS -- not just people who make you less fearful of the disease. We all have stories to tell. Our lives are just as dope.

Can you speak on the discrepancies in research for Black Persons with MS?
We talked a little bit about this with Dr. Mitzi Joi Williams in episode 49 of our podcast, but I think it's really important to focus on research specifically relating to African-Americans, as we're the demographic being diagnosed at the highest rate, proportionally here in the US. But, it's also important that researchers acknowledge the fact that Black people in the United States have a very precarious and complicated history with the medical profession as it relates to research; this needs to be acknowledged. This may play a part in influencing participation. We had a really interesting conversation with Lauren and Victoria from "We Are Ill" about this issue in Episode 62 of our podcast (which starts streaming at the end of this month).

go listen to their podcast!!! found here:

What needs to happen for the future to be more inclusive? Where/how do we start?
In order for the MS community, or for the future to be more inclusive, I think it is important for people to consciously seek out stories that are more diverse. We live in a euro normative society so it's important that we are intentional about the stories that we seek out.

People should not avoid listening to stories that might make them feel uncomfortable. Whether it be people who have different life experiences, people who look different, or people at a level of disability than you -- levels that makes you uncomfortable. It important to listen to all stories.

I think that it is important to be aware the fact that Black people are not a monolith. A lot of time, the representation that we do see is very limited. It's important that we acknowledge, represent and amplify the stories of Black people at all stages of MS -- people who symptoms are invisible all the way to people whose symptoms can no longer be hidden (which can elicit fear, and that are not palatable to some people). We all have stories to tell. Our stories are dope.

What's 3 things that MS Organizations, such as the NMSS, can do to help this issue in the community?
First, I think it's important to have open honest and frank discussions about race, racism, and representation--no matter how uncomfortable that might make people.

Secondly, I think that organizations need to be conscious about avoiding tokenism. Lately in the "inclusive" (albeit limited) MS literature/marketing, we see the same Black faces. They almost serve as tokens in the Black MS community; that's problematic. Organizations need to be more intentional about seeking out different people (within the MS community) dealing with MS. Especially people whose stories might be complicated and complex (not just the newly diagnosed with invisible symptoms). Black people with MS are not a monolith.

Additionally, we feel that in order to better understand our point of view, collaborative efforts should be put in place. Being able to communicate our efforts on this journey, accomplishments, and personal stories are equally as important to the community. Continuous open dialogue (with a diverse group of Black MSers) would certainly open the door and provide a pathway towards inclusion. Also, Black MS does not begin and end in February (Black history month) – our stories should be amplified ALL YEAR.

What is something that people with MS should take away from all this?
We appreciate having this conversation, and feel there are many positive takeaways that will come from this conversation.

It’s important that MS organizations along with the community collaborate with Black voices that are often unheard. Also, actively seeking out the stories of black people with MS is beneficial to the community. It brings us together and displays a united front. We are in this fight and we too, which brings us to our final takeaway; inclusion.

You can follow Dawn and Daana on instagram @myelinemelanin and their webpage is: