Navigating chronic illness often means balancing conventional medicine, complementary care, and well-meaning advice. One columnist reflects on finding a thoughtful, whole-person approach without losing sight of safety.
My Bitter & Best Friend: MG — Sarah Bendiff
From the heart of North Africa, Sarah Bendiff shares her journey with myasthenia gravis. Diagnosed in 2019 after 13 years of searching for answers, she had to step away from her physics studies as her body resisted treatments. The digital opportunities that arose during the COVID-19 crisis in Algeria allowed Sarah to rebuild. Through digital marketing and content creation, she found strength and resilience, channeling her creativity to thrive in a remote, connected world.
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When it comes to illness, we like having a reason for it. When my stomach hurts, I ask myself what I ate. When I catch the flu, I wonder who I might have gotten it from. So when I was diagnosed with myasthenia gravis (MG), my first questions were…
Note: This column describes the author’s own experiences with various pain management techniques. Not everyone will have the same response to these modalities. Consult your doctor before starting or stopping a therapy. Living with a chronic illness means I am never truly well. Early in the morning, my muscles might…
When I was diagnosed with myasthenia gravis (MG), the flare was so severe that I could no longer pray the way I used to. As a Muslim, I pray five times a day, and the prayer ritual includes standing, bowing, kneeling, and getting back up several times, but my…
Years after being diagnosed with myasthenia gravis (MG), I still find myself navigating other people’s perceptions of my disease almost as often as I navigate my symptoms. But while my muscles are unpredictable, people’s reactions seem surprisingly consistent. Most fall into three categories: those who think I’m faking,…
When I was a teenager, I thought smoking was cool. It seemed fun to try with friends, and for years, that is exactly how it stayed. I would smoke only three or four cigarettes a year, usually during a relaxed evening with friends. It was never a habit. Lately, though,…
I wanted to live life to the fullest this year. I wanted to act as if I had no chronic disease, to try every activity that crossed my mind, to be more social, more active, and, in the end, simply happier. After years of feeling trapped inside an invisible cage…
I think that one of the hardest parts of living with an invisible disability is having to reconsider one’s career. From 2017 to 2026, I explored almost every work model imaginable: freelance, remote, hybrid, and full-time. Each came with its own advantages and challenges, and, surprisingly, this is one of…
I lived for 19 years before I ever heard the words “myasthenia gravis” (MG). For the next seven years after that, I learned how to live with it, advocate for patients like me, and eventually accept it. Now, I find myself back in a place of uncertainty. During a…
For years, I had a big goal: to run a race, a trail, or maybe even a marathon someday. It wasn’t because I particularly love running, but because I wanted to prove to myself that, even though I live with myasthenia gravis (MG), with the right training, I could…
Writing this column is the best job I’ve ever had. It gives me the chance to cry my heart out every week about a situation that nobody around me truly understands. I can have a peaceful exchange with complete strangers about a chronic problem we have in common: myasthenia…
I’ve watched movies about many medical conditions. Cinema has explored dramatic accidents, disabilities, and illnesses in beautiful and heartbreaking ways, helping to raise awareness and show how different perspectives can exist around the same struggle. We see the experience of the ill person, but also of their loved ones, their…
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