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By Marti Hines
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The nurse asked if I had any questions before they wheeled me into brain surgery. I remember lying there beneath fluorescent lights, wearing a gown that didn't feel like mine, thinking there was only one question I couldn't bring myself to ask: “If I wake up, will I still know who I am?”
I thought that was the biggest question I would ever have to answer. I was wrong.
For most of my life, I was the person everyone counted on. I built a career producing events where hundreds, sometimes thousands, of details had to come together at exactly the right moment. If my family needed something, I showed up. If a friend called, I answered. I loved solving impossible problems. I loved making people feel cared for. I liked being the one people could depend on. It made me feel useful. It made me feel safe. At some point, I stopped noticing how often my schedule revolved around everyone else's needs instead of my own. There was always one more event to produce, one more family member to help, one more crisis to solve. I rarely asked myself what I needed because I was too busy making sure everyone else had what they needed.
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Being dependable wasn't simply something I did. It became who I was. And I wore that identity like armor, without ever questioning what it was protecting me from. Looking back, I don't think I understood the difference between being loved and being needed. I had become so comfortable earning my place by taking care of everyone else that I never stopped to ask who I was without that role.
Then my body stopped cooperating.
At first, the symptoms were easy to dismiss. I was tired, but everyone is tired. My hands and feet tingled, but I assumed it was just stress. My vision changed, but maybe I had been staring at my computer for too long. Like so many women, I explained away what my body was trying to tell me because I had too much to do and too many people counting on me. Then one morning, while on vacation, I woke up partially paralyzed. I felt a sharp pain down my life side, like an electric shock, and then I felt nothing. I was completely numb on my left side and then I realized I couldn’t move. I screamed out for my sister downstairs—at least I thought I was screaming. She later told me it sounded like a weak moan coming from upstairs. When she got to me, I was attempting to crawl to the door; she recalls me saying faintly that I wasn’t ready to die.
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The weeks that followed unfolded in a blur of MRIs, specialists and conversations I never imagined having in my 30s. I was diagnosed with multiple sclerosis. I learned I also needed brain surgery. I remember calling my dad, trying to sound steady and hold the conversation together the way I held everything together. I could hear him trying to do the same on the other end. Two people who loved each other, both pretending to be OK so the other one wouldn't fall apart.
When I got home, I couldn't return to the life I had left behind. Family and close friends brought meals. They drove me to appointments. They carried things I couldn't carry. I remember someone reaching for my bags at the door, and instead of feeling grateful, I felt panic. Like if I let someone else carry them, I was admitting something about myself I wasn't ready to face. I'd spent so many years anticipating everyone else's needs that I didn't even know how to answer when someone asked what I needed. "I'm fine" came out automatically, even when it wasn't true. Accepting help felt vulnerable, as if I were asking people to love a version of me that could no longer earn it. Every single act of kindness felt uncomfortable. Not because I wasn't grateful, but because I didn't know how to receive it.
Illness has a way of exposing the stories we tell ourselves. Mine was that needing people somehow made me less of the woman I had worked so hard to become.
Healing wasn't just learning to live with multiple sclerosis (MS). Healing meant letting go of that belief. It also meant learning to trust myself in a healthcare system that didn't always make that easy. There were appointments where I left with more questions than answers. Moments when I wondered whether I was explaining my symptoms clearly enough. Times when I questioned my own instincts because someone else seemed so certain they knew my body better than I did. As a Black woman, I also found myself questioning whether I had to work harder to be believed. Eventually I realized the problem wasn't that I wasn't speaking clearly. Too often, women—especially Black women—aren't being heard.
Travel changed, too. Trips I would have taken before without thinking now required planning. Spaces I once loved started to feel like reminders of the person I used to be. I went to Disney World, a place I had been to dozens of times, and nothing about the experience was the same.
On that trip, I met a woman who also had MS. We didn't exchange long stories or medical histories. She just looked at me at one point and said, "You don't have to pretend it's fine." That was all it took for me to realize how much energy I had been spending performing OKness for everyone around me. She wasn't trying to fix me. She wasn't offering advice. She just saw what I was carrying and gave me permission to set it down, even for a second. That moment did something no diagnosis, treatment plan or well-meaning friend had been able to do. It made me feel less alone.
That's when something shifted. I started paying attention to the women around me, mainly Black women, who were navigating the same impossible balance: managing a chronic illness while managing everyone's perception of how well they were managing it. Women who had been dismissed by doctors, doubted by people who loved them, and left to figure it out on their own. Women who, like me, had spent years being the strong one and had no roadmap for what happens when your body decides that's no longer an option. I kept hearing versions of my own story reflected back to me, and the more I listened, the more I realized how many of us were carrying this weight in silence.
I started sharing my real life on social media: the hard days, the messy emotions, the moments nobody tells you about when you're living with a chronic illness.
Women started reaching out. Not just to say "me too," but to say "I've been looking for this." Women who had been scrolling through perfectly filtered lives, wondering why nobody was telling the truth about what chronic illness actually looks like. Black women who had never seen someone who looked like them talk openly about MS without sanitizing it. The messages kept coming, and every single one confirmed something I had only suspected: There were so many of us out here, and most of us thought we were the only ones.
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So I kept going: I eventually created a documentary that follows the stories of five Black women living with MS, called All in My Head. And I formed the H Collective, a nonprofit for people living with chronic illness, where people can connect to others who understand what they’re going through. Because when I was at my lowest, the thing that brought me back wasn’t a prescription: It was someone else saying, “Me, too.”
Today, I still live with multiple sclerosis. Some days, my body surprises me with everything it can do. Other days, it reminds me to slow down. I'd love to tell you I completely let go of the need to be the one doing everything. The truth is, I didn't. Some days I still catch myself reaching for productivity before rest. I still have to remind myself that needing people isn't failure. It's part of being human.
The difference now is that I no longer measure my worth by how much I can carry alone. Strength looks like accepting help without apologizing. It looks like resting when my body asks me to. It looks like believing in myself, even when the world is slow to catch up.
Years ago, lying on that hospital bed, I thought the biggest question was whether I would wake up knowing who I was.
The truth is, I didn't. I woke up as someone else. And if there's one thing I hope every woman learns sooner than I did, it's this: Your worth was never measured by how much you could carry. It never was.
Marti Hines is the founder of the nonprofit H Collective as well as a documentary filmmaker, keynote speaker and storyteller using the power of narrative to advance health equity and transform conversations around chronic illness.
All views expressed in this article are the author's own.
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