Because of myasthenia gravis, I don’t drive anymore

For the longest time, I thought the biggest obstacle to driving would be my foot pain. I never considered that myasthenia gravis (MG) would affect my ability to drive.

My foot pain — unrelated to MG — would come and go, so for a while, I avoided driving because I was afraid of it. But four years ago, I decided to find my courage. What was the worst that could happen? At most, I’d feel some discomfort, but I could handle that.

So I went out. I drove no more than 20 kilometers (12.4 miles) and had lunch with a friend. Everything went great. I enjoyed the meal, laughed, and felt normal again. I stayed out from noon to 3 p.m., feeling proud of myself for getting back behind the wheel. But when it was time to go home, my legs refused to cooperate.

I barely made it to the parking lot. My steps were unsteady, and the weight in my legs seemed to increase with every movement. Still, I told myself, “Just get in the car. You can rest when you’re home.”

But the moment I sat in the driver’s seat and placed my foot on the pedal, I knew: I couldn’t press down. My muscles wouldn’t respond.

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Until that moment, I’d always assumed that, among MG patients, driving was a problem only for those with ocular symptoms — after all, diplopia (double vision) makes driving extremely difficult. But I never thought about generalized MG affecting my ability to drive, especially while I was on treatment. I’d convinced myself that as long as I was managing my symptoms, driving was still within my reach.

That day, I realized how wrong I was. MG doesn’t follow rules. Treatment or not, flare-ups happen. I had no choice but to sit in my car and wait.

I called my sister, but she was at work. She told me she’d come as soon as she could, though that meant I had two hours of waiting — alone, trapped in my car, unable to move.

I think I cried. I don’t remember exactly. I just recall the overwhelming frustration and fear. People walked by, some even knocking on my window to ask if I needed help, but I couldn’t bring myself to answer. I didn’t want to explain. I didn’t want to talk. I just wanted it to stop.

Looking back, I think I might’ve had an anxiety attack as I realized how unpredictable my condition could be. What if that had happened on the highway? What if I had been far from home, alone in a place where no one could come get me?

That day changed everything.

Why I no longer drive

Since then, I’ve never had the courage to try again. Even though I’ve been medically cleared to drive, I can’t ignore what happened that day.

Maybe now, four years later, my body will cooperate. But I’m too scared to try. It’s not just about my physical capabilities; there’s also the mental toll of not knowing when my body might betray me. I don’t want to be in a situation where I have to stop in the middle of the road, unable to move, and wait for someone to rescue me.

Some days I wonder if I’m overreacting. But then I remember sitting in that car, staring at the steering wheel, willing my legs to move — and nothing happening.

For now, I’ve accepted that driving isn’t for me. Maybe I’ll try again one day, but for now, I choose safety over risk. And honestly? That decision hurts more than I expected.

Accepting limits, finding peace

Living with MG means constantly adapting, compromising, and grieving parts of life I once took for granted. Losing the ability to drive is more than just an inconvenience — it’s a loss of freedom, independence, and control.

I don’t know if I’ll ever get past the fear, but I do know this: Accepting our limits is not a weakness. It’s just another way of learning to live with the unpredictable nature of MG.

Maybe I’ll drive again. Maybe I won’t. For now, I’m just trying to find peace with my reality.

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.