Some people go through life thinking pain has rules. That if you’re young, smiling, and holding it together, then it can’t be that bad. But for one woman, the worst pain imaginable didn’t come with a warning. It came suddenly, violently, and it changed everything.
She had always been the “sick one” in her circle. As a kid, she’d joke about having arthritis, even though no child should ever feel that kind of ache. Growing up, she was the friend who canceled plans because she “didn’t feel good.” Nobody ever thought much of it. Not even her. But when she got pregnant at twenty-five, her body began sending signals that could no longer be ignored. At thirty-one weeks, she woke up seeing flashes of light that wouldn’t fade. Her instincts told her something was very wrong. Everything changed when her doctor saw her blood pressure — 220 over 150. She was rushed straight to the hospital.
Within hours, she was told her liver was failing. Her platelets had crashed. She had HELLP syndrome, a rare and dangerous complication of pregnancy. The baby had to come out immediately, or neither of them would survive. They wheeled her into the operating room, stripped her down, strapped her to the bed. Around her, nurses shook bags of blood, ready for a transfusion. She remembers the blur of movement, the mask coming down, and nothing. When she woke up, she was being wheeled into the ICU. The pain was indescribable, a kind that stole her voice. She could only mouth the words, “How’s my baby?” He was alive. Tiny, just three pounds, but perfect.
While her newborn son grew in the NICU, she tried to recover, but her body had other plans: fevers, infections, exhaustion. Then strange new symptoms crept in, double vision, numb arms, partial blindness. Her doctor sent her to a neurologist, then a rheumatologist, who finally put a name to what had been haunting her all her life: lupus and antiphospholipid syndrome. Autoimmune diseases. Sticky blood. A heart that could clot without warning.
For a while, medication helped. She even had another child, carefully managed with blood thinners and close monitoring. But then, in 2017, the headaches came back. Then the confusion. Then the terrifying sensation that something inside her brain was misfiring. Her heart hurt. Her hands tingled. Her vision blurred again. She went to the hospital, desperate for help. Her troponin levels were high, the kind of result doctors see in heart attacks. But the neurologist dismissed her. He called it a migraine. She wanted to scream. She knew this wasn’t a migraine. Her body had been whispering its warnings for years; now it was shouting. But no one listened.
Later, her insurance tried to send her back to that same doctor. When she arrived, his nurse told her he refused to see her. He remembered her from the hospital and disagreed with her “attitude.” She walked out of that office in tears, humiliated and angry. All she needed was one doctor to believe her. That doctor turned out to be Dr. Grossman, a rheumatologist at UCLA. She looked at the labs, sky-high inflammation levels and the strange splinter hemorrhages under her nails. She knew something was wrong and refused to stop digging.
A year later, a special heart test revealed the truth. Vegetations — tiny infected growths — were clinging to her mitral valve. Her heart was inflamed. The valve was leaking. The disease had a name: Libman-Sacks endocarditis, a rare and dangerous complication of lupus. Those little pieces had been breaking off, floating through her bloodstream, causing mini-strokes. All that time she was fighting through dizziness and confusion; her brain was literally being hit again and again.
Now, she lives on blood thinners and chemotherapy medication to keep her immune system from attacking itself. The leak in her heart will never heal. But she’s alive because she didn’t stop pushing. Because she knew her pain was real, even when doctors didn’t. People look at her and see a healthy young woman. What they don’t see is the battle raging inside her. They don’t know the strength it takes to wake up every day and fight her own body.
She says she’s proud she trusted her instincts. Proud, she spoke up, even through tears. She might not be here to tell the story if she hadn’t. And maybe that’s the message hidden inside all the pain. Believe in yourself. Don’t wait for someone else to validate your suffering. Sometimes survival starts with one stubborn thought: I know my body and something’s wrong.
