Behind the Diagnosis: Seen, Heard, and Still Fighting: The Black Patient Experience with MS

Minority Health Month Feature

When Victoria Reese Brathwaite was diagnosed with Multiple Sclerosis in 2012, she found herself alone. She was highly educated, insured, and doing everything “right,” yet her symptoms were dismissed and her questions went unanswered. When she searched for information, she couldn’t find anyone who looked like her. That absence wasn’t just frustrating, it was revealing. Because for many Black women, the healthcare journey doesn’t begin with treatment. It begins with trying to be believed.

Before her diagnosis, Victoria remembers the feeling more than anything else. Her body just didn’t feel like her body anymore. There were moments she couldn’t quite explain. Numbness that came and went. Fatigue that didn’t match her lifestyle. Subtle neurological changes that didn’t make sense for someone her age. At first, like so many of us, she tried to push through. Maybe it was stress. Maybe she was overworked. Maybe it would pass. But it didn’t.

Eventually, the symptoms became too persistent to ignore. After navigating multiple appointments, tests, and referrals, she finally got an answer. Multiple sclerosis.

And just as she was trying to process what that meant, she heard something that would stay with her. “Black people don’t get MS.”

In that moment, her personal diagnosis collided with a much larger truth. The issue wasn’t just what was happening in her body. It was what the system didn’t understand about Black women’s bodies. That realization became the foundation for something bigger. What began as sharing her story online grew into a movement. From #WeAreILLmatic to the nonprofit We Are ILL, Victoria founded what she couldn’t find: community, representation, and a space where Black women navigating chronic illness could feel seen.

Ashley’s Story: The Long Road to Being Heard

Ashley Ratcliff Lundy’s journey began with a moment she couldn’t ignore. After a long day on her feet, she noticed numbness. At first, it seemed manageable. But then it changed. The numbness turned into tingling. Her ability to walk started to decline. Her foot wouldn’t cooperate, dragging with each step. “You could hear me coming,” she recalls.

She sought care, expecting answers. Instead, she was sent from one provider to another. A podiatrist suggested a pinched nerve. A chiropractor diagnosed a herniated disc. She was referred to physical therapy. Still, nothing improved.

As her symptoms progressed, she began asking for more comprehensive testing. She wanted answers that matched what she was feeling in her body. But instead of being met with curiosity, she was met with resistance. She was told her insurance wouldn’t approve additional scans, though the request was never submitted. Her symptoms were attributed to stress.

At one point, discouraged by how she was treated, she canceled an appointment with a specialist. But something in her refused to settle. She rescheduled. And when she finally sat in front of a neurosurgeon, everything shifted. Within moments, he recognized that what she was experiencing didn’t align with the previous diagnosis. An MRI revealed lesions. A spinal tap confirmed MS.

When Care Misses the Mark

Ashley describes the emotional weight of not being believed. Of having to explain, re-explain, and defend what she knew was happening in her body.

Being dismissed doesn’t just delay diagnosis. It shifts how patients engage with the entire system. When trust is broken, patients may hesitate to seek care, delay treatment, or disengage altogether. And for conditions like MS, where early diagnosis and intervention matter, those delays can change outcomes.

Ashley shared a time when she lost access to her medication after losing her job. Without guidance or support from her care team, she went months without treatment. Not because she didn’t care, but because she didn’t have the resources or support to continue. That experience highlights a reality many Black women face. Healthcare is not just about diagnosis and treatment. It is shaped by everything happening outside the exam room.

Care doesn’t exist in isolation. It is shaped by financial stability, access to insurance, reliable transportation, and whether providers are aware enough to ask the right questions about a patient’s real-life circumstances. When these factors are overlooked, care becomes incomplete.

But Ashley’s story also shows what’s possible when care is done differently. When a provider takes the time to listen, to explain, and to acknowledge fear instead of dismissing it, the entire experience shifts. That kind of care doesn’t just inform, it restores trust. And trust, in healthcare, is not a soft skill. It is essential.

The Pattern We Can’t Ignore and What Needs to Change

Victoria’s story and Ashley’s story reflect different experiences, but ultimately point to a shared reality.

What they encountered reflects a broader pattern in how Black patients experience healthcare. Through We Are ILL, Victoria and Ashley not only empower patients to advocate for themselves, but also engage directly with providers through sessions like Understanding the Black Patient Experience. These conversations highlight that gaps in care are shaped not just by access, but by trust, communication, and cultural understanding.

These patterns aren’t always obvious. They often show up in subtle ways, like when a concern is brushed aside, a question isn’t fully answered, or symptoms are attributed to stress without deeper investigation. Over time, these experiences build on each other and can lead to a loss of trust in the healthcare system. That mistrust can ultimately affect how and when patients seek care, and it can have serious consequences for their health.

Improving outcomes for Black women requires more than awareness. It requires a shift in how care is delivered at every level.

Providers must be willing to listen fully, without interruption or assumption. They must validate patient concerns and engage in shared decision-making, recognizing that patients are experts in their own bodies. Cultural competence is not a one-time training. It is an ongoing commitment to understanding, learning, and adjusting. It also means acknowledging the role of bias and systemic inequities in shaping patient experiences.

At the same time, both Victoria and Ashley speak to the importance of self-advocacy. Asking questions. Seeking second opinions. Continuing to push for answers. But the responsibility for better care cannot rest solely on the patient.

A Message for the Newly Diagnosed

For anyone receiving a diagnosis like MS, both women offer the same grounding reminder: take a breath.

A diagnosis can feel overwhelming. It can shift how you see your body, your future, and your daily life. But it does not take away your purpose or your potential.

Their guidance is simple and powerful:

• Build a care team that listens and supports you
• Educate yourself so you can make informed decisions
• Find community so you don’t have to navigate this alone

And most importantly, remember that you are still you.

Why This Story Matters Now

Minority Health Month is about more than raising awareness. It is about naming the reality that Black women are still navigating a healthcare system where being heard is not guaranteed. Where outcomes are shaped not only by disease, but by how we are treated when we seek care. And yet, stories like Victoria’s and Ashley’s remind us of something equally important.

We are not just navigating the system. We are changing it.

Listen and Learn More

Explore more conversations from We Are ILL and hear directly from women navigating chronic illness with honesty, strength, and community.

Patient In You podcast episodes.