Young, Black, & Living with MS: Antionette’s Story

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Antionette is a dear friend of mine from college; we met when I took Model UN my last semester in undergrad, and she was one of the “higher ups” within Winthrop’s Model UN.  She and I were mutual friends with one of my Sorority sisters, and we forged a quick friendship of our own.  Antionette affectionately refers to me as “Mama V” since I’m a couple of years older than her, and our friendship has grown beyond our Model UN years.

Antionette graduated from Winthrop with her B.A. in Political Science in 2010, and is currently pursuing her Master’s degree in International Business.  She is 27 years old, lives in Charleston, SC, and works for the Department of State.  Antionette is the typical Millennial, in that she has many hobbies and interests that keeps her busy – she is a Mary Kay consultant, a martial artist (she has a Black belt in Karate and plans to her further her martial arts training), and likes to listen to as well as create music with her brother.  As you can see, she is definitely a go-getter, and is one of the sweetest people you’d ever meet on this side of the Mississippi River.

Earlier this year, I learned that Antionette has been quietly fighting a battle of her own, one she decided to share on the one year anniversary of her diagnosis.  Antionette has MS, or Multiple Sclerosis; when I read the testimony about her journey, I was truly amazed.  I had been in light contact with Antionette over the past year, and I did not have a clue that anything was amiss with her or her health.  Antionette shared that she had remained quiet about her journey as she was trying to understand this new normal in her life.  I asked Antionette if I could interview her for the blog, and she graciously gave me the honor to share her story with my readers and supporters.

Without further ado… HERstory:

What is MS?

Multiple Sclerosis is an immune-mediated disorder, in which the immune system incorrectly attacks healthy tissue in the Central Nervous System.  In addition, connections/signals between nerve endings are slowed down some because myelin (fatty tissue/protein surrounding the nerves) slowly begins to unravel and is hard to repair once damaged.


What were the signs / symptoms that caught your attention?  Is there a family history of MS?

What made me really take note in regards to signs and symptoms was that my left arm from the shoulder down went completely numb and it felt like dead weight.  I could see myself moving my left arm, but I couldn’t feel myself moving it.  Also, I had a sharp, electric feeling coming from my shoulder up to my neck all the way up to right behind my left ear.  In regards to it being hereditary, it does not run in my family, at least not to my knowledge and that it is not a hereditary disease.


What did you experience during your 1st year of official diagnosis?  

That’s quite a lot within one question.  There was definitely some denial.  At first there was acceptance right after being diagnosed and I just took it for what it was.  But then, as time progressed on, I’ve experienced some other side effects due to medication and some that appeared outside of my medication.  The denial then kicked in more afterwards because there are times where I feel like it’s just a dream and it’s not real, but I came to the realization that it is and I have to deal/live with it.  

Emotions definitely have played a HUGE part of this.  Emotions are subject to fluctuate a little more than the average person, meaning that it is fairly similar to that of a roller coaster – well, at least that’s the best way that I can explain mine:  happy one moment, down the next, and being super sensitive to the smallest things.  As far as disclosure, it took a LONG time to let other people know that I have Multiple Sclerosis because it was hard to believe myself.  But also, what came to mind was how would others view/perceive me?  But I’m still currently letting people know, but bit by bit.  I am slowly beginning to embrace the acceptance within myself.  I just publicly let people know on Facebook on my 1st anniversary of being diagnosed on February 17, 2015 and also, I just recently revealed it to those in my church.


How are you handling your diagnosis a year later?

I’m slowly beginning to embrace it and trying to control it a little better with new medication and hopefully, one day down the line, we can find a permanent cure for it.


What do you want others to know about MS?

One thing I want others to know is that it’s not particular as to who gets it.  It’s not one race over another and it has proven to not be hereditary.  However, because it seems to have a little more prevalence in the Minority communities, it is something to keep an eye out for.  And please know that it’s NOT a death sentence!!!!  The earlier you catch it, the better.


Why should MS be on our radar within the African American community?

Actually, it occurs in most ethnic groups, including African-Americans, & women develop MS moreso than men (2/3:1).


What are the misconceptions about MS you’ve heard others say/share?

One thing that I’ve always heard was that it always happens to older people and it makes them crippled, can’t walk, etc., but that has been shattered in my mind – most that have Multiple Sclerosis are usually diagnosed between the ages of 20-50.  I was diagnosed at the age of 25, but I’m alive & well and not crippled (seeing as I am still pursuing my karate).  So, MS knows no number or age group/generation.


What are your hopes with living with MS?  What does MS mean to you?  

As I stated earlier, my hopes are that I can manage my disease better with my medication and that hopefully we can find a cure and to find even more support in regards to my journey.


How can those who know you support you during this journey?  

Just keep me, my family, and my friends in prayer because this journey is most definitely not easy.  But your love and support means the world and it helps to know that I’m not alone in this.  And if you would like, you can add/donate to campaigns that help to fund MS to help push us closer to finding a permanent cure for MS.


Do you have encouraging words for anyone living with MS, especially young people?  

It is NOT a death sentence!!!!  It may be a setback, but see it as a setup for a comeback.  Use it as a stepping stone to enhance you overall and give you more strength because you will find that you will pull from a place deeper than you will ever dream.  Don’t get down about it, it’s not over; rather, push forward and live life!!!!


Final Thoughts

I feel very fortunate to have been afforded the opportunity to share Antionette’s story, and to learn more her life with MS.  Being able to share the testimonies of disabled women of color has been a huge goal I wanted to achieve for the blog, and this will be the first of many interviews to be shared.

If you are a disabled young woman of color with a powerful HERstory, please reach out to me by email:  Vilissa@rampyourvoice.com.  We have to uplift and empower each other so that we know we are not alone, and to create a more diverse voice within the advocacy realm.

If you would like to learn more about Multiple Sclerosis, visit the National Multiple Sclerosis Society’s webpage.

About Vilissa Thompson, LMSW

Vilissa is the Founder & CEO of Ramp Your Voice!, an organization she created to establish herself as a Disability Rights Consultant & Advocate. Ramp Your Voice! is a prime example of how macro-minded Vilissa truly is, and her determination to leave a giant "tire track mark" on the world.

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