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#045: NoStressMS – Entertaining education about MS. Interview with Damian Washington

Damian Washington is my interview guest today, and we talk about his important role as a black patient advocate, speaking up and bringing visibility to a large community that has a high disease burden but is not yet well seen. With his entertaining approach, Damian is helping to make it easier to learn about MS and the challenges that come with the disease.

His background as an actor and producer who has directed three dozen national commercials in the US certainly helps him prepare his content. Join us for an enjoyable conversation about multiple sclerosis.

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Table of Contents

Introduction – Who is Damian Washington?

Damian Washington: diagnosed with MS in 2017.  I’m from New York City and currently live in Los Angeles. Married to my college sweetheart of 23 years.  A performer who’s been in just over three dozen national commercials and voiceovers for brands like McDonald’s, Fruit of the Loom, and Ring w/ Shaquille O Neal.  My YouTube vlog quickly became about my experiences living with multiple sclerosis and my vlogs about my Ocrevus infusions are the most popular videos.  Because I’ve emerged as a leader in the patient voice and patient perspective, I often consult on patient advisory councils for companies like Genentech, Merck and Novartis. 

Comedy and MS Awareness

Can you share a bit about your personal journey with Multiple Sclerosis and what led you to create comedic videos about it?

I’m a performer – a creator.

Over years of making YouTube videos, I noticed the videos that had the most views were the ones about my life with multiple sclerosis.  The Ocrevus infusion vlogs are were popular and I’ve since emerged as a voice that helps people with multiple sclerosis feel, seen heard and understood.

How do you find humor in the challenges of living with MS, and why is it important to you to raise awareness in a comedic way?

The comedy is more about authenticity for me.  My videos are funny because I, myself, am funny.  Scroll all the way down the channel history to the very first videos and they all have some sort of comedic flair.  As I created video around my infusion process and dealing with the runaround from insurance companies, it’s helped others with the condition find their own way forward. While a patient might not share the same symptoms, if you share the medical condition itself that shared space allows for vulnerability and therefore a close connection and, sometimes, maybe even some laughs.

Can you describe your comedic style and how you incorporate it into your videos about MS?

Things are only “funny” if they’re “true”.  As long as I’m being genuine and authentic and real in my videos, on any subject, there will always be some sort of jovial feeling about them.  The topic of multiple sclerosis itself is not at all funny but that’s a part of the channel’s appeal.  Much of the detailed information about multiple sclerosis is convoluted and my ability to get in and out of subjects engagingly, and with humor, helps simplify that data.

What are some common misconceptions or myths about MS that you've addressed in your videos?

How has creating these videos helped you connect with the broader MS community, and what kind of feedback have you received?

The channel has over 6,000 subscribers and every few days or so, someone will leave a comment on one of the 200 plus videos.  I create more on Instagram these days now and that community is 10,000+ which has helped me become well-known as a candid and authentic representative of someone living with multiple sclerosis.

Representation and Outreach

You've touched on the importance of representation in the Black community. Can you share more about this and why it's crucial for MS awareness and support?

Oftentimes, MS is thought of as a White person’s condition but the data simply does not support this notion.  A study from 1997 – 2007 of the United States military Veteran Affairs system demonstrated an incidence rate of 12.1 per 1000,000 Black people living with multiple sclerosis vs 9.3 of Whites.  Another study, published in the journal Neurology, has the incidence of MS in Southern California, where I currently live, with Black patients vs White is 10.2 per 100,00 vs 6.9.  In addition, a study done by The New York State Multiple Sclerosis Consortium demonstrated that for a host of reasons Black people with MS have a higher disability rate than Whites when measuring cognitive and ambulatory functions.  There are a few more studies which point to more terrible nuances with this trend but, suffice to say, the numbers tell a different story about MS and the Black community than the one that’s frequently presented to the general public.

Due to this, it’s even more important for me to a visible patient advocate to help support the notion, however it was ill-formed, that Black people get MS, too.  Black people are indeed people and, as such, subject to the same human condition as other humans.  Highlighting Black voices is important because social and racial disparities only compound the invisibility that defines a medical condition like multiple sclerosis.  This may seem like a random point but the person responsible for ensuring that all sidewalks in the United States have curb cuts for wheelchair user accessibility, Bradley Lomax, was a wheelchair user, a Black man and member of the Black Panther Party.  That is a mostly unknown fact and that is not okay because dismissing Black voices also dismisses the richness that diversity brings to the tapestry of human experience and discounts the contributions that were hard-fought by Black people yet affect people from all racial and ethnic backgrounds.

Have you collaborated with other MS advocates or organizations, and what kind of outreach efforts have you been involved in?

The National MS Society, for sure, with their Black MS Experience Summit was an outreach effort I was involved with specifically for Black people.  Most of my work is on patient advisory councils for companies like Johnson & Johnson, Novartis, and Genentech helping to shape the design of new medicines or inform their patient focused research. 

How can the MS community work toward being more inclusive and supportive, especially for underrepresented groups?

It starts with being curious.  Whenever you see a study, instead of taking the reports at face value also ask yourself “Who were the participants in the study?”  “Did they make sure to include as many different types of people as possible?  Ages, racial demographics, sex, etc.”  Another way to build community is to host more events and programming for underserved populations led by members of that same community.

What advice would you give to others who want to use humor to raise awareness about health conditions like MS?

Be authentic.  I’m not at all “trying to be funny” but my personality in its most relaxed, most candid version is most likely going to inspire some chuckles.  No one understands what it’s like having MS quite like another person with MS.  When you create with the focus of authentically sharing your experience, laughter might soon follow because while multiple sclerosis is not at all funny, the shared crummy experience can be.   

Can you talk about your experiences with MS treatment options and any advice you have for others navigating this journey?

It’s important to figure out which treatment works best for you and stick with it.  I recently interviewed someone who had an experience where the doctor wanted to use a more aggressive treatment than the patient was comfortable with and that rift was just part of a bigger miscommunication between that particular doctor patient pairing.  You are the one with the MS so you get to drive the MS treatment car.  Showing up at the doctor’s office like “Here I am.  Fix me, Doc.” will not yield your best health outcomes because while the doctor is an expert in medicine, they are not an expert in you. 

Balancing Comedy and Seriousness

How do you strike a balance between humor and addressing the serious aspects of living with MS?

Much of the humor comes from the uncomfortable nature of living with a serious medical condition – the prospect of it getting worse, having less options as the condition progresses, etc.  My take on it all is simply frank and candid.  People mostly remark upon how well-researched and engaging my content is before getting to the funny part.   I find the balance between the humor and serious by sticking to the serious high-stakes nature of it all as closely as possible.  That understanding will inspire shared connection and, if I’ve done all the other things properly, a laugh.

Has your comedic approach to MS had any positive effects on your personal health and well-being?

My doctor’s notes say that I “have a significant burden of disease” but also that I am “remarkably well-adjusted”.  Personally, I am driven by the notion of “now what” instead of the notion of “woe is me”.  I eat differently and maintain a regular meditation schedule because of multiple sclerosis and I’m unsure if I would have those healthy habits without the condition.

Can you share some favorite moments or interactions you've had with viewers or the MS community as a result of your videos?

The moments which are the most impactful for me are when someone leaves a comment that my videos are helpful with their own personal experience with a medical provider / procedure or that I help them feel understood in ways in which the people around them are unable.

What are your future goals and plans for your comedic MS awareness videos?

I have a giant goal of creating over 150 quick, one-minute videos about understanding the different aspects of MS from an experienced patient’s perspective to help newly diagnosed patients better understand their novel medical situation. The process has taken years because each video had to be scripted, to fully take advantage of SEO, and then filmed.  Now, I’m in the editing phase and, while the whole project is going much more slowly than I would have initially liked, I am, currently, 25% complete. Once fully completed, the series will consolidate and simplify much of the scattered and dense medical information about MS in one place and present it all in an engaging manner.

Since I’m a team of one, the project has taken years to slowly piece together but when finally complete, it will be a large reserve of carefully researched, dynamically presented information that anyone searching about any aspect of multiple sclerosis will be able to find.  It’s exciting because living with multiple sclerosis is tough enough and needing to become an expert on the condition only compounds that toughness.  I did not have the benefit of having simple, engaging, easy to understand and trustworthy information to help with me difficult decision making and navigating my serious medical condition so I’m looking forward to bridging that gap for others.  If you know of any video editors that will take on the task at a low cost or pro-bono, let me know!

Using Humor and Favorite Topics

What are some of your favorite video topics that you've created to inform others about MS symptoms and treatments?

I love the “process” videos, whether I’m going to the infusion center or the healthcare office to work out billing issues, the times when the camera is happens to be recording and capturing something another patient can find useful but that I didn’t necessarily structure is wonderful.

Quickfire Q&A Session

Complete the sentence: "For me, multiple sclerosis is...."

For me, multiple sclerosis is like being in a club. It’s a pretty horrible experience to be a member of this club but the other people in it with you are some of the coolest people you will encounter.

Which website can you recommend for people living with MS?

What development would you like to see in the field of multiple sclerosis in the next 5 years?

I’d like to see the patient voice continue to take the forefront of the conversation.  It baffles me how a company could make a product for a person without really consulting that person.  Like, “They are a person.  People like these sorts of things.”  That may be true, but does a person living with multiple sclerosis resonate with those same things in the way you envision?  The only way to know is to ask them.

Farewell

How and where can interested people find you online?

A big thank you to Damian for all his efforts and good luck and energy for the future.

See you soon and try to make the best out of your life,
Nele

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Nele Handwerker

Blogger & Patient Advocate

I show you how to make the best of your life with MS from family to career to hobbies. Thanks to science and research, a lot is possible nowadays.

Nele Handwerker

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