I’d like to make a movie about what living with myasthenia gravis is like

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 friends, and even strangers they meet along the way. And yet, I never truly saw myself anywhere.

No movie speaks about myasthenia gravis (MG) in a way that feels real to me, so lately, I started imagining what an MG movie would look like if I created it myself.

MG: The motion picture

If MG were a movie, it would not begin in a hospital room or during a dramatic diagnosis scene. It would start quietly. The main character would be a housewife running around trying to keep up with the energy of her three children. She is loving, funny, and slightly clumsy. One morning, she tries to prepare a bottle of milk for her baby and drops it on the floor. Her husband gets frustrated and jokes about how clumsy she is becoming.

But in her mind, there is only confusion.

We would follow her through a normal day, except nothing is truly normal. She secretly develops little techniques to survive daily life. She places a pillow behind her neck because her head feels too heavy. She sits every few minutes while she is cleaning. She avoids carrying things for too long. She adjusts constantly to symptoms she does not yet understand.

Later that day, a friend from the gym calls her and comments on how physically weak she has become since giving birth. Her friend encourages her to get back into sports and “take control of herself again.” Her husband, who loves fitness, agrees and tells her that movement might help her regain confidence and revive their relationship.

Motivated by guilt and hope, she decides to attend a Pilates class.

While driving there, she suddenly starts seeing double. She parks the car for a moment, breathes deeply, and forces herself to continue as if nothing is happening. She almost convinces herself that her vision is normal.

During the Pilates session, everyone around her experiences exercise as something empowering. They focus on breathing, flexibility, and progress. Meanwhile, she struggles silently. Her muscles shake uncontrollably, she keeps losing her balance, and pain slowly takes over her body.

After the session, another participant invites her to brunch. She feels happy, included, almost normal again. But while walking together, she notices that this person also struggles physically. He explains that he has MG and talks about how difficult it is to live with it.

That night, she searches online for the disease after a coughing fit brought on because she was unable to swallow her tea properly. And slowly, painfully, she realizes that she recognizes herself in every symptom.

The movie would then follow her grief. Not only the grief of health, but the grief of the future she imagined for herself. We would watch her move through sadness, denial, anger, fear, and eventually, adaptation.

I would want the movie to show how unpredictable MG truly is. Even when you accept it, even when you build a life around it, it still hurts. It still surprises you. It still interrupts joy.

But I would also show the beauty of community. The relief of finally meeting people who understand you without explanation. The strange humor that is shared together. The comfort of no longer feeling alone.

Seeing myself

I want an MG movie because I truly believe it would help many people recognize themselves before their diagnosis. MG feels like a silent viper. You don’t even notice the bite at first. You only feel the wound burning slowly while your energy disappears little by little.

A movie like this would not only represent patients. It would help husbands, wives, friends, and caregivers understand what living with a chronic illness feels like. And it would also help patients understand how confusing and painful this journey can be for the people who love them.

The curse of chronic illness is that it touches everything: your relationships, your self-esteem, your studies, your work, your plans, your children, your body, and your relationship with yourself. But maybe if we start understanding it together, we can make the burden feel a little smaller — like preparing for a marathon instead of surviving a war.

Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.