An open letter to my younger self about life with myasthenia gravis

This column is a letter to my 9-year-old self. I’m choosing this age because I was lost then — and not only because of my disease. It was my last year of primary school and the point at which my life shifted from that of a child to that of an adult. Myasthenia gravis (MG) had decided to make its first appearance, and it wasn’t humble.

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Dear 9-year-old Sarah,

Stop waiting. Your diagnosis won’t change much in your life. The doctors you’re expecting to be your saviors are not superheroes. They don’t know how to make your condition go away. It’s called MG, which sounds scary, but it’s not; it’s just very annoying. Are you ready to face it? In 17 years, you will be.

In a few months, you’ll have an appendix surgery, and your stitches will open because you won’t be able to breathe properly. You’ll keep coughing, and doctors will say there’s no explanation. But I’m here to tell you that your body is exhausted. MG, though you don’t know it yet, is playing with your lungs and diaphragm. You’re doing your best by saving your breath, staying calm, and moving slowly. And that’s exactly what you need to do, because even now, medication can’t fully resolve MG.

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You’ll transition into middle school, where the other preteens are more interested in flirting and having fun. Meanwhile, you’ll keep going to the restroom to check your wound and wonder if it’s normal that you have shortness of breath.

You’ll be sent to more than five psychologists who think your symptoms are all in your head, that you’re making them up for attention.

Congratulations! You’ll also have a little sister born right after your surgery. No, you’re not jealous. You’re just sad that your arms aren’t strong enough to hold her for more than two minutes.

Doctors from different specialties will tell you, “When you find out what it is, come back and tell us.” Don’t let that scare you. They just don’t know.

You’ll have your first period three years later, and your body won’t be welcoming — but hey, enjoy the feeling of becoming a young woman! People will still worry that you won’t have kids. (Crazy, I know.)

You’ll graduate from high school during a flare-up, with the specialization you wanted, and you’ll even get into the university you dreamed about. Many people will hate you for it and stop being your friends because they’ll think you’re faking your intelligence. You’re not; you’re just too clever.

University will disappoint you. It won’t be like the movies. You won’t make it as a physicist, because that’s when your MG diagnosis will finally come — and it will scare you.

But here’s some good news: Even though your body won’t always respond to medication the way it should, you’ll learn to manage your condition with extra sleep, rest, motivation, and more rest.

Also, we made it. I’m writing this letter to you as a columnist for an MG website! And that’s not all. I’m also a social media manager, content creator, teacher, graphic designer, video editor, SEO specialist, event manager, and training designer. I’m probably forgetting a few titles, but I’ve tried most everything. I’ve worked with schools, stylists, agencies, startups, renovators, and even an actor you’re watching on TV in 2008.

So stop waiting for the diagnosis to save you. Stop waiting for medicine to fix everything. Listen to your body, keep a slow rhythm, and don’t be afraid.

Don’t be afraid to ask doctors silly questions; it might help guide them. Don’t be afraid of what people think when you’re too tired. Don’t be afraid of becoming paralyzed. It can happen to anyone at any time, with no warning.

It’s OK to feel lost. MG can have that effect on people, as rare diseases are complicated, but the condition is our friend now.

Instead of living for the future, focus on the present. You’ll make the most of all the calm periods, and even during flare-ups, you’ll discover amazing books, series, and movies.

Love yourself. No one else can do it better because you’re the only one who truly knows what you’re carrying inside.

***

Posting this feels intimate, but I’m sure many people will recognize themselves in it. I hope they find comfort, hope, and love here.

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.