Changing the world for people affected by MS since 1946 — during MS Awareness Week 2021 and every day.

Victoria
Advocate.
Co-founder of We Are ILL.
Diagnosed in 2012.

I was a healthy 25-year-old who had just moved to Los Angeles to start my career in a fast-paced Hollywood talent agency. When my legs started randomly falling asleep and making it difficult for me to take the stairs, I went to see my primary care physician.

He attributed the numbness in my legs to the stress of my career and prescribed me antidepressants. I didn’t think I needed medicine to change my mood, but when something is happening that’s so different, you just listen to your doctor.

After the numbness spread to my face and I experienced an excruciating migraine, I went back for an MRI of my brain and spine. The MRI showed lesions in my brain and combined with my symptoms, my doctor felt it was multiple sclerosis.

Being a primary care physician, he didn’t have any literature about MS. He handed me a few pieces of paper stapled together to tell me about the rest of my life.

I immediately felt like I had no control – what if I end up in a wheelchair? If I have kids, what if what just happened to me happens to my baby?

I didn’t know what MS was apart from hearing it from a childhood friend, and the disease seemed to affect older, white women. I was young, Black and felt like a unicorn for having MS.

Now, almost 10 years later, a lot has changed. I am now mother to a beautiful, healthy baby girl and an advocate for patients.

Looking back, the moment of diagnosis is crucial. No one tells you that you need to brace yourself to become an informed patient. If you’re a healthy person who doesn’t really go to the doctor, whatever doctors say, you just listen. But once you become a professional patient, you start to understand that you should advocate for yourself. You have to be knowledgeable so you and your doctor can work as a team. Living with this illness, you have a relationship with your body where you’re always learning. Yes, I trust my doctor… but I trust myself, too. I know my body.

Getting involved in patient advocacy work, I began to speak with Black women and was blown away when I heard the same story over and over again — they had never met another Black person with MS. There were so many people who felt the same way I did.

I started We Are ILL as an awareness campaign on social media and an online support group to help others feel less “rare.” We Are ILL is now an organization with a support group that has grown tremendously. Black women can search for us and think, “I see myself.”

We need to see that Black women get MS, too. And there’s still more work to be done. Together, we can change the narrative of what it means to live with MS.

Changing the world for people affected by MS since 1946 — during MS Awareness Week 2021 and every day.

Let's move forward together.

Start here.