“Faith Is Not a License to Ignore Knowledge,” 27 Year Old Woman With Sickle Cell Shares Her Life Journey

“Faith Is Not a License to Ignore Knowledge,” 27 Year Old Woman With Sickle Cell Shares Her Life Journey.

My name is Zainab. I am 27 years old, and my medical notes say I am SS. This means I live with sickle cell disease. My story begins not with me, but with a choice my parents made. They were both AS. They knew what that meant. They were told. They decided to marry anyway.

They believed God approved. They were sure love would be enough. They had faith the consequences would be covered. I am that consequence.

My diagnosis came before I turned two. My childhood wasn’t built on memories of playgrounds or Saturday morning cartoons. It was built on hospitals. On needles. On the hushed tones of adults who thought I wasn’t listening.

In primary school, my absences were so common teachers stopped asking for reasons. Some classmates decided I was faking. Others whispered that I was cursed. I learned how to smile very young, a skill to hide the feeling of being utterly different.

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By secondary school, the crippling pain episodes—what we call crises—grew more frequent. I’d wake up excited for a normal day, only to end it on a hospital bed. I watched my friends grow up in a straight line, while my own life moved in a jagged pattern: school, hospital, recovery, and back again.

When I was 15, my younger brother died from complications of sickle cell. We were both SS. That day, something in me broke for good. I saw my parents shatter. They cried, they held me, they apologized over and over, saying, “We followed our faith. We didn’t think it would be like this.” But the reality was already here. It was me. It was my brother, gone.

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Some days, I find a way to forgive them. Other days, I feel a deep and quiet anger. Both feelings are true. They live together inside me.

At university, I tried to build a normal life. I joined advocacy groups. I volunteered with organisations raising awareness. I stood at events and encouraged young people to check their genotype before falling in love. People call me strong. They call me a warrior.

What they don’t see is me alone in my room at night, crying from a pain I’ve learned to bear silently. They don’t see the constant undercurrent of fear that comes with planning a career, a life, in a body you can’t always rely on.

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And then there is love. That has been its own kind of pain.

I have been loved, in pieces. But the moment a relationship turns toward serious talk—marriage, children, a future—things change. Some men are honest and say they can’t handle it. Some just vanish. Some make beautiful promises about forever, about taking me somewhere with better care, and then they quietly disappear.

One man told me he would do anything for me. I let myself believe him. For the first time, my heart felt quiet and safe. Then, his calls stopped. The heartbreak that followed triggered one of the worst physical crises I’ve had as an adult. The pain wasn’t just from the disease; it was from the collapse of hope.

I’m older now. The pain crises are different. Sometimes less dramatic, but somehow more draining. My body takes longer to bounce back. The questions I carry are heavier. I find myself asking things my parents never asked each other.

Yes, I am strong. But I am also so very tired.

This is why I am writing. If you are AS, and the person you love is AS, please listen. Please love your unborn children enough to pause and think. Faith is beautiful, but it is not a reason to close your eyes to what you know. My life is proof of that.

I never asked to be a lesson for anyone. But if sharing my story can stop one child from being born into a life of preventable pain, then my voice has a purpose.

I am sharing this because someone, somewhere, needs to hear it. They need to hear it before they choose to walk a path my parents walked. Sickle cell disease is not a theory. It is real. It is my life.

To every couple in love with matching AS genotypes: your love can be real, and your choice can still be kind. Choose wisely. For the sake of the child who might one day have to live with the consequence.

Copied from her Facebook page and edited by Toktok9ja Exclusive

“Faith Is Not a License to Ignore Knowledge,” 27 Year Old Woman With Sickle Cell Shares Her Life Journey.