When I was diagnosed with multiple sclerosis, I assumed the hardest part of being sick would be the illness itself. I was wrong. The hardest part was when it made me stop believing myself.
It wasn't a single devastating moment, but the quiet accumulation of occasions where I left doctor's appointments feeling like I hadn't presented my symptoms well enough, wondering whether I'd earned the right to be taken seriously.
Living with multiple sclerosis meant becoming fluent in uncertainty. I never knew when a new symptom would appear, whether it would fade, or whether it signaled something my doctors needed to take seriously. That uncertainty made trust essential — trust in my body, trust in my instincts, and trust that the people caring for me would take my concerns seriously. When any one of those was missing, the burden of living with chronic illness became exponentially heavier.
Every dismissed symptom became evidence that I might be exaggerating. Every inconclusive test became proof that maybe this was all in my head.
That erosion of self-trust is one of the least discussed consequences of chronic illness. And for women, it doesn't happen in isolation. Women have long had their pain minimized, their symptoms questioned, and their concerns attributed to stress, anxiety, weight, or emotion rather than illness. Too many women have sat in exam rooms describing something real and walked out wondering if they made it up. That experience alone can be enough to delay care, silence symptoms, and slowly teach a person to shrink.
For Black women, there's another layer entirely. The challenge isn't only navigating this new label and everything it carries. It's also navigating a healthcare system where our pain is even more frequently questioned, minimized, or misunderstood. I knew that feeling well.
My diagnosis came fast and without warning. I thought the numbness in my hands and feet was poor circulation from spending too much time on airplanes for work. Then, while on vacation with my family, I woke up one morning paralyzed down my entire left side.
Overnight, everything changed. I was suddenly navigating a chronic illness that would be part of my life forever. Pain became a constant companion, and before I'd even had time to grieve the life I thought I would have, I learned I would need brain surgery. Even though that procedure offered a chance at a better quality of life, I walked into the operating room grieving a future that no longer looked the way I had imagined. Following my brain surgery, I thought the biggest challenge would be recovering physically. Instead, I found myself grieving the certainty I once had in my own body.
Living with multiple sclerosis meant accepting that symptoms could appear without warning and disappear just as quickly. It meant learning to make plans while knowing my body might have other ideas. It meant carrying an invisible illness that people often couldn't see, even when it shaped every decision I made. I remember walking into appointments carrying not just a list of symptoms, but the fear that this time I'd be told I was imagining them. It was incredibly isolating.
Eventually, I realized I had spent years searching for someone who looked like me who was willing to tell the truth about living with chronic illness. I couldn't find her.
So I decided to become her.
I started sharing my life online through Marti's MS Life. At first it was simply a way to stop pretending I was OK. I wanted one place where I could tell the truth about living with multiple sclerosis — not just the MRIs and medical appointments, but the quiet moments in between, when chronic illness reshaped my life in ways no one else could see.
Soon I discovered that I wasn't alone. Women started reaching out. Black women, specifically, those who had been holding the same doubt I had. My inbox filled with messages from women who had spent years questioning themselves because doctors had questioned them first. Again and again, I heard the same sentence in different forms: I thought I was the only one. The details of our lives were different, but we were all living with the weight of wondering whether anyone would ever believe us.
I couldn't stop thinking about the women who went home believing they were the problem instead of recognizing the system had failed them.
My story suddenly felt less like an exception and more like part of something much larger.
I couldn't stop thinking about the women who went home believing they were the problem instead of recognizing the system had failed them.
That's what eventually inspired me to interview other Black women living with multiple sclerosis to create my documentary All in My Head. I wanted to give women a chance to finally feel validated and to confront the healthcare system that had consistently looked away. The women described the same invisible wound: the slow, steady loss of confidence that comes from being dismissed by the very people you're trusting with your life.
This is how I learned healing can happen when someone simply believes us. We heal when someone says, "Me too." We heal when our stories are witnessed instead of questioned.
Medical school curricula have evolved over the past decade to emphasize empathy and communication, but it's not translating into the lived experience of patients, particularly Black patients. The gap between what is taught and what is practiced is where trust dies.
What if healthcare systems measured whether patients felt heard? What if listening was treated not as an interpersonal nicety, but as a core clinical competency? What if we understood that when a patient feels dismissed, the clinical consequences are not abstract? People wait longer to seek care. They minimize symptoms. They apologize for taking up space. They convince themselves they'll feel better tomorrow. Sometimes, they don't.
I hope we keep investing in research, in treatments, in medical discovery. But I hope we invest just as fiercely in something that costs nothing and changes everything. I spent years wondering whether I could trust my own body. Today, I know the problem was never that I wasn't listening. It was that too few people were listening to me. Healthcare doesn't begin with a prescription or a diagnosis. It begins with belief. Every patient deserves to be seen, heard, and believed. That shouldn't be the exception. It should be the standard of care.
Marti Hines is the founder of H Collective, a documentary filmmaker, keynote speaker, and storyteller using the power of narrative to advance health equity and transform conversations around chronic illness.
