The Missing MS Face

Editor’s Note: Understanding starts with listening. And we believe it is our responsibility to shine a light on what it means to live with multiple sclerosis. We will continue to amplify the voices of the Black community to deepen the understanding of what it means to live with this disease. Share with us. Add your voice to the MS community — we want to hear your stories. Email us at community@nmss.org, or join the conversation on Facebook or Instagram.
 
For additional information and resources, visit our website and Momentum Magazine.

 

Last month, we celebrated World MS Day on May 30.
 
We stand "connected" with our MS family throughout the world by raising awareness for this disease. But this month, America is hurting and managing the impact racism is having on our country.

 
We've seen people lose their lives in front of our eyes. We've seen it playing out in the streets. The hurt and devastation is real and can no longer be ignored. 
 
While there's no comparison of the degrees of injustice, I admit seeing acts of racism and injustice in front of your eyes makes you a believer in the presence of the inequities in our country. 
 
So, in honor of World MS Day and every day we live with this disease, I would like to lift up an invisible inequity present in America.
 
Sometimes the prevalence of racism is so institutionalized and such a fabric of who we are, we don't even recognize it.
 
Healthcare is complicated and expensive as is, and when you mix in a chronic illness and racial disparities in this country, it’s easy to accept things as the way they are. I’ve seen it myself - the longer wait times in doctor's offices, the lack of advocacy for mental health, the overpriced medical care, the food deserts, lack of sufficient office hours, the belief that our lives don't matter, the mindset that we do this to ourselves, fighting with doctors about treatment options, the 6 month wait for appointments, lack of research information, and many more small hidden things that make you pause, but fall short of alarm. 
 
For a long time, MS was thought to affect mostly those of European descent. But this isn’t true.
 
Did you know that black patients are 47% more likely to have MS? How about that MS in black people carries a greater risk of progressing, and we’re more likely to experience more relapses and greater disability? Black women have some of the highest instances of MS, but we’re less likely to get diagnosed and receive the proper treatment (which is something across healthcare). 
 
Without years and years of self-advocacy and fighting with medical providers and insurance companies, many of us die without ever receiving our basic human right. 
 
It's time that we begin our global attack on MS from all corners of the world and provide equality in awareness, research and treatment. It's time for the faces of MS to represent all MS warriors. 
 
Being "connected" means that WE are all part of the MS community. The battle with MS cannot be won until there is awareness, support and a cure for us all. 
Tags Activism & Advocacy, Symptoms      5 Appreciate this
NJ

NJ White

One year into a prolonged and late MS diagnosis, NJ is managing living and thriving with MS by establishing her voice for education and advocacy for multiple sclerosis. New to blogging, NJ is excited to increase transparency, awareness and empathy for this illness.