Redefining Wellness with We Are ILL

Embracing Power and Presence at the We Are ILL Wellness Weekend

The Wellness Weekend, hosted by We Are ILL , recently held in Atlanta, proved to be an unforgettable experience filled with insights, raw conversations, and empowerment for Black women living with multiple sclerosis (MS). I was honored to be the keynote speaker at this event, themed "Take Up Space," which calls on Black women to embrace their power, fill the spaces they occupy with purpose, and make their presence known unapologetically.

Breaking Down Barriers: Embracing a New Self Amidst Loss

For many Black women with MS, one of the greatest challenges is grieving the loss of their former selves. This chronic illness forces a profound shift in how they see themselves and live their daily lives. As the disease imposes physical and mental limitations, women are often faced with the painful realization that they can no longer do what once came easily. Activities that used to be second nature—whether physical, like exercising or simply running errands, or mental, such as focusing on complex tasks—now demand energy they no longer have. This transformation requires not just physical adaptation but also emotional acceptance of a new identity, a journey that can feel isolating and unending.

On top of these personal struggles, many women at the event shared stories of feeling dismissed or overlooked by the medical community. Some had to fight relentlessly to be heard, advocating fiercely in a system that often minimized their symptoms. A pervasive misconception that MS is predominantly a “white woman’s disease” left many women without proper support. Several attendees spoke of doctors who insisted they “couldn’t have MS” simply because of their race, reinforcing damaging biases that delayed diagnoses and, as a result, worsened their condition.

These dismissals left some women battling undiagnosed symptoms for years, leading to severely progressed disease by the time they received adequate care.

This journey of self-advocacy isn’t just about fighting for a diagnosis or effective treatment. It’s about reclaiming control in a world that seems intent on stripping it away. Through resilience and support from one another, the women at We Are ILL have found a community that understands their struggle—a safe space to grieve, heal, and redefine themselves. This solidarity empowers them to confront the healthcare system with renewed strength, demanding the care, respect, and acknowledgment they deserve.

Twin Journeys: A Tale of Shared Strength

One of the most impactful stories shared at the event was that of twin sisters, each living with MS. At first glance, it might seem logical to assume that because they share nearly identical genetics, their disease would present similarly. Yet, their journeys with MS have been profoundly different, underscoring the unpredictable nature of the disease and how it manifests uniquely in each individual.

For one twin, MS showed up primarily through cognitive symptoms—issues with memory, focus, and processing, which made it possible for her to "blend in" externally. Because her symptoms were internal, she often felt invisible, even to her own doctor, who was less inclined to offer comprehensive support or resources. He even suggested she work with a therapist instead. Without the visual markers of disability, her struggle with MS went largely unnoticed, leading her to feel unsupported in her medical care.

In contrast, her sister’s MS was more visibly apparent, manifesting in physical symptoms that required her to use a walking aid. Her challenges were visible to the outside world, and her doctor responded accordingly, leaning in with additional support and resources to manage her condition. Despite having the same doctor, the difference in how each twin’s MS presented led to vastly different levels of attention and care. It highlighted a common issue faced by many individuals with invisible illnesses—when symptoms are not outwardly visible, they are often minimized or overlooked, even by healthcare professionals.

Though they have shared each other's lives and provided mutual support, MS has drawn a complex line between them, creating moments where they can relate deeply and others where they simply cannot understand each other’s experience. For one, the cognitive symptoms are a daily battle that affects how she engages with the world, while for the other, physical mobility challenges have reshaped her environment.

Together, they navigate a shared reality yet walk two different paths, each sister a mirror reflecting different facets of the same illness.

Their story of unity and divergence became a powerful symbol for many at the event, illustrating how MS, in its many forms, defies assumptions and requires a nuanced, individualized approach. Through their bond, the sisters reminded everyone that the MS journey is as varied as those who walk it, and even those closest to us may struggle in ways we can never fully understand. Their strength lies not only in their shared genetic makeup but in their resilience to face the unknown—together and apart.

Navigating MS During a Pandemic: Isolation, Fear, and Resilience

For many women at the Wellness Weekend, their journey with MS began in the shadows of the COVID-19 pandemic, an added layer of fear and uncertainty. During a support session, several participants shared that they received their diagnosis at the height of the pandemic, a time when isolation was at its peak, and healthcare resources were focused primarily on managing COVID-19 cases. The pandemic heightened the sense of isolation for these women, as they not only faced the reality of their diagnosis but were also cut off from immediate support networks, struggling to process this life-altering news alone. In some cases, critical treatments were even put on hold to prioritize COVID care, which left them feeling vulnerable and fearful about their health’s trajectory.

For those diagnosed with MS before the pandemic, the experience was different but equally challenging. Already on immunosuppressive therapies, many had been familiar with isolation practices and were well-versed in the need to protect themselves from potential infections. In some ways, they were better prepared for the lockdowns and quarantines that accompanied the pandemic. Yet, even with this preparedness, they faced a uniquely taxing experience: battling MS amidst external chaos and increased public health restrictions. The pressure of maintaining their health during a global pandemic strained personal relationships and led to the painful loss of friends who didn’t fully understand or respect their health precautions. Family dynamics also shifted, with some relationships strained by the physical distance and the heightened need for careful boundaries.

The pandemic presented a dual battle for these women—coping with the realities of MS while navigating a world in crisis. Their resilience in maintaining their health and advocating for their needs amidst such external challenges became a testament to their strength.

Shifting Narratives: Embracing Intimacy and Pleasure as a Right

At the Wellness Weekend, an impactful session focused on the often-overlooked topic of intimacy and pleasure, which can be especially challenging in the context of chronic illness. This subject is already taboo for many, and in communities managing long-term health conditions, it’s often shunned or avoided altogether. Yet, as was highlighted in the discussion, this conversation is crucial: over 75% of MS patients experience challenges with intimacy, whether physical, emotional, or spiritual. For those in the session, it became clear that reclaiming pleasure in their lives was an essential, healing act.

Facilitated by the vibrant and knowledgeable speaker Goody Howard, MSW, MPH , the session emphasized that pleasure is a birthright. Howard’s presence—warm, engaging, and entirely disarming—allowed attendees to relax, let down their guards, and open up to her insights. She reminded everyone that pleasure isn’t just about sexuality; it extends to all aspects of life where joy, comfort, and satisfaction can be found. By expanding the concept of pleasure beyond physical intimacy, she helped shift the perspective on what pleasure means, how it can be sought, and why it’s essential for holistic well-being.

Living with MS can profoundly affect one’s physical capabilities, emotional health, and spiritual grounding, all of which are intricately connected to intimacy. For many, the condition’s unpredictable symptoms—such as fatigue, cognitive changes, and physical limitations—can make it difficult to connect with partners or even with oneself in a way that feels pleasurable or fulfilling. Howard’s message was a powerful reminder that pleasure is not only achievable but transformative.

When individuals experience pleasure—whether through a comforting moment, a creative pursuit, or connecting deeply with another person—it shifts their outlook and enhances their quality of life.

Through her engaging approach, Howard demystified the conversation around pleasure, leaving everyone with a renewed sense of its importance in their lives. The session encouraged attendees to embrace pleasure in all its forms, to let it enrich their lives, and to view it as a vital part of their wellness journey. In an environment where women could finally feel seen and heard, Howard’s empowering message helped redefine pleasure as a source of strength and resilience for those living with MS.

Carrying the Wellness Weekend Forward

As we closed out the Wellness Weekend, the air was thick with a sense of purpose and solidarity. For the women who attended, this wasn’t just another event—it was a reclamation of identity, power, and community. The theme, “Take Up Space,” served as a reminder that these women, who are often unseen or misunderstood in their daily lives, have every right to be heard, respected, and celebrated. Through shared stories, deep conversations, and moments of laughter and vulnerability, attendees found themselves emboldened, ready to confront the challenges of living with MS with renewed strength and an empowered sense of self.

This weekend highlighted an essential truth: Black women with MS are more than their diagnosis. They are mothers, partners, professionals, and creators, each with unique journeys and contributions. In a world that too often overlooks their pain or minimizes their struggles, this community showed them that they are not alone and that their voices matter. Together, they have built a safe space to grieve the lives they once had, to celebrate the victories of today, and to dream of a future where they are empowered to live fully and authentically.

But the work doesn’t end here. This event was a launchpad, a spark igniting a greater movement for advocacy, visibility, and change. As we carry these conversations forward, let this weekend be a call to action for everyone—patients, allies, healthcare professionals, and advocates. We must push for a healthcare system that listens to and values the experiences of all individuals, especially those who have been marginalized. Let’s continue to fight for spaces that allow Black women with MS to live boldly, access the care they need, and experience the fullness of life.

In taking up space, these women are not only embracing their own journeys but also creating a legacy of resilience and strength that will inspire generations to come.

Kudos to the We Are ILL team: Victoria Bri, Lianca, Amber, & Ashley

Shoutout to the fabulous speakers: Mitzi Joi Williams M.D., FAAN , Annette Okai, MD, FAAN , Jacqueline Rosenthal, Jakai Nolan McEwen, DO, MPH , Blair Burleson, Goody Howard, MSW, MPH , Dr. Sonza Curtis MPAS, ND, PA-C IFMCP , Connie O'Neal-Bates , Mary Hughes, Evelyn Hunter, Danielle Virgil

Shoutout to the amazing support group facilitators: Nwandi Williams, LPC and Charmaine Turner

And a big applause to the best emcee in the game: Carmen Jones