The words I’m writing are not meant to present myself as a hero or anything of the sort. I’m writing them for the people who reach out to me, asking about my experience with illness and how to fight it.
I’m writing them for the girl who told me she wants to die before the disease kills her.
I was born into a middle-class family. My mom and dad were both salaried workers. We had good days and tough days, sometimes we had enough, and other times things were tight. But overall, I lived, grew up, and studied in Tunisia, occasionally traveling abroad because my parents were willing to sacrifice everything to give me the best life possible.
Things were going well until the age of 11, when I was struck by a disease called LUPUS LED.
This chronic disease, which has no cure and affects different parts of the body over time, completely upended my life.
From being a girl from Ezzahra who spent her days at the beach, in gymnastics, on the tennis court, or playing soccer with the neighborhood kids, I found myself in a state of complete dependence—unable to feed or dress myself.
I was forbidden from going out in the sun, so the beach was off-limits. I had to follow a strict diet because I started taking corticosteroids and dealt with their side effects.
At just 11 years old, I began to lose my appetite for food and life. My body changed drastically due to the illness: I became swollen, my skin tone changed, and stretch marks marred my body.
This was a tough age to endure these transformations, especially for a girl who equated her physical appearance with her worth.
I underwent chemotherapy. I suffered.
But with the support of my family, I managed to overcome it. My dad’s talks with me, his insistence that life has both good and bad moments and that we must fight through them, helped me let go of my old daily routines and create a new world for myself.
My new world revolved around books, music, and cinema. It was a world mostly confined to my home, school, and hospital.
At the hospital, I learned a lot. My eyes were opened to the struggles of others. I saw kids abandoned by their families because of their illness, yet still fighting. I witnessed the stark contrast between Tunisia’s official discourse and the harsh reality of insufficient resources and equipment.
Despite these challenges, I continued my education under difficult circumstances: frequent absences, constant fatigue, pain, and limitations. But I persevered and earned my high school diploma.
Sure, I had to let go of dreams like joining the military academy or studying medicine—dreams driven by my love for serving my country and humanity. Instead, I pursued studies at the University of 9 April, majoring in language studies. I excelled academically, consistently achieving top grades.
During my time at university, I was mostly quiet and reserved. My teachers often struggled to recognize me, as I rarely spoke and was frequently absent due to my illness. But I stood out in certain subjects, to the point where professors actively sought me out
In my final year of university, life dealt me another blow: I lost both my kidneys.
I found myself in a hospital bed during exam periods, taking exams and returning to the hospital immediately afterward. My father would wait for me outside the exam room, ready to step in if I fainted or worse.
Thanks to the support of my family, doctors, medical staff, and professors, I managed to complete my studies and graduated first in my class.
At that point, I began a grueling journey with peritoneal dialysis—a daily 10-hour procedure. I had a catheter placed in my abdomen and spent years learning how to operate the machine, clean it, and take care of my wound. It was a delicate process where one mistake could be deadly.
I lived through it all and even experienced infections that brought me to the brink of death, leaving me feverish and unable to speak.
Despite this, I pursued a master’s degree, earning it under these same challenging conditions and ranking among the top three in my program.
Eventually, my parents refused to see me continue living like this. Discussions about a kidney transplant began, with both of them volunteering as donors. After many tests, my mother was chosen to give me her kidney. On February 14, 2007, Valentine’s Day, we entered the operating room together.
When I woke up, I found myself in a sterile room, feeling an indescribable sense of relief. My breathing was normal for the first time in years. My mother, however, faced complications due to an infection from the surgery.
My younger brother, born a year after my initial diagnosis, was deeply affected by my illness. Much of the family’s attention was focused on my treatment, leaving him to mature faster than his years. Today, he is a source of strength and inspiration for me.
Six months after the transplant, I found myself participating in the World Transplant Games in Bangkok. Despite minimal training due to limited time and resources, I won a silver medal, raising Tunisia’s flag high.
Later, I was awarded a Fulbright scholarship and studied at Tufts University in Boston. This experience broadened my perspective on Tunisia and allowed me to meet incredible people.
Writing became my outlet. I started a blog to talk about injustices and challenges, even though it led to censorship, harassment, and threats from authorities. But my parents had instilled in me the courage to speak up for what’s right.
I became active in the revolution, documenting protests, writing, and advocating for change. After the fall of the regime, I found myself under the spotlight, receiving awards and even being nominated for the Nobel Peace Prize. But this brought its own challenges: criticism, rejection, and isolation.
Despite losing my job and enduring years of unemployment, I continued to work on translations, articles, and training sessions. My family remained my rock, and the kindness of strangers kept me going.
Though my body sometimes gives in to fatigue and pain, I keep pushing forward, dedicating my time to helping others, whether by driving long distances to collect books for prison libraries or standing up against injustice.
To the girl who reached out to me: don’t give up. Illness is exhausting, and despair is natural. But every time I’ve been at my lowest, I’ve found something—a book, a song, a kind word—that has brought me back to life.
Remember, medicine advances every day, and what seems incurable today might become a trivial matter tomorrow.
Live for yourself, help others, and keep fighting. Every one of us will face the end someday. But what truly matters is how we live and the legacy we leave behind.
