The mission of We Are ILL
The social media campaign evolved into We Are ILL, a nonprofit organization with an essential mission: To support, educate and unite Black women who have been diagnosed with multiple sclerosis and to improve health equity for Black women living with MS.
Here’s some of what we do to carry out our mission:
We started a Facebook support group to create a private space where women with MS could talk about their experiences and see one another.
At the beginning, everyone talked about feeling alone and not meeting anyone else who had MS. But then they also were able to ask each other questions about experiences, medications or doctor appointments. They know they aren’t alone.
Education and health literacy
It takes a while to get educated. We’re doing a lot of programming, whether it’s educating people about pharma companies or giving more information about disease-modifying therapy (DMT) or how to talk to a neurologist.
We also help with health literacy. Like, what the acronyms mean and a patient's rights. Health literacy is for everyone, but if you are from an underserved community, it can be overwhelming.
Some people feel they need permission to get a second opinion. Or we hear things like, “They said they won’t do this for me.” Well, did you ask them to record that on your medical report so that it’s documented? A lot of people don’t know they have permission to do that.
If you only go to the doctor with a common cold, you’re not coming into your MS team with the confidence you need to advocate for yourself.
Unity is a game-changer because we didn’t know we were so strong in numbers. Now, we’re able to support science by increasing the participation of Black women in clinical trials.
There’s a lot of mistrust. But we can talk about it this way: If you as a patient want to see studies with Black people with MS, you’ve got to participate.
That’s why the connection with Nas is so important. Our first video used the same colors, the same font, the same look as his, and people got it. It was like, “Oh, this is different.”
The very first day I dropped that video, Nas reposted it! People who had MS or a mom with MS saw it and followed us. I chose this angle to cut through the mess.
People could identify themselves and hold their head up high. We’re not a member-based nonprofit, but people are like, “I’m part of We Are ILL.” They found a community. A home.