After decades with MG, I finally know what I want from others

Last week, I went outside almost every day, often to go to the office. It’s something I usually try to avoid. I like to keep a routine — one day off after two days of work — to give my body time to recover. But lately, I’ve been pushing myself more for the sake of my career. And maybe, deep down, I also wanted to defy myasthenia gravis (MG).

But on the way to the office at 10 a.m., my legs just stopped. I couldn’t take another step. My body collapsed on the sidewalk from the metro, and so did my mind.

Anxiety kicked in when I remembered that my boyfriend was about to join me at the office. I was scared — not of his presence, but of his reaction. I feared there’d be stress in his voice, pity in his eyes, or worse, a reproach: You didn’t take care of yourself. You didn’t listen to your body. You let your attention-deficit/hyperactivity disorder take over again.

I tried to crawl my way back to the office, just a five-minute walk, hoping to get there before him and avoid the confrontation. But 15 minutes passed, and I was still in the same spot. I knew I’d lost the race. And then, since he takes the same route, he arrived.

Recommended Reading

June 26, 2025 Columns by Sarah Bendiff

The weight of asking for help; the difference an act of service makes

I felt him approaching, and I braced myself, like a child who’d broken a glass and was waiting to be scolded. I was one second away from mentally collapsing until I heard him say, calmly, “Hey, you’re off?”

That’s it. No judgment. No stress. No fear. Just a simple observation.

I’m used to very different reactions from people around me. They’ll say things like “Why did you push yourself?” “See, we told you!” “So what, now you need to go to the hospital?” Or the infamous: “Come on, your legs are working fine, just walk.”

But that day, something shifted. He didn’t take my stress and make it his. He didn’t try to fix the situation or make it about him. He gave me space — space to feel, to speak, to exist as I was, without pressure.

Caught off guard, all I could say was, “Yes.” Then I hesitated, embarrassed to admit I’d forgotten my Mestinon (pyridostigmine bromide). And do you know what he did? He just took my bag and asked if I wanted him to go buy me a new bottle of medication. No blame, no lecture — just action. He went to the pharmacy and came back with the rescue I needed.

When we got home, he didn’t take over. He didn’t insist I lie down in bed instead of on the couch, even if it might’ve been more “reasonable.” He helped me settle where I wanted, without offering his opinion on what would be better for me.

When love means listening

I don’t know if I sound crazy writing this, but I’ve spent so much of my life being told what to do, what’s best, how to live with my disease. So when someone just listens — truly listens — it feels like a radical act of love.

For years, I didn’t know how to answer when friends asked me, “What’s the best way to help during a flare-up?” I’d just shrug and say, “There’s nothing to do. Just let it pass.”

But now I know: What I want is to be listened to. I want to be the only one stressed at that moment, not have my fear multiplied by someone else’s panic. I want to make my own decisions about what happens to my body — even if others think I’m making the wrong call. It’s my body, my experience, and my MG.

I hope every sick person has someone who just gets them. Someone who helps without needing to control. Someone who doesn’t take over emotionally, even if they’re coming from a place of love. Please don’t treat me like I’m unconscious just because my body isn’t responding.

As I always tell my friends: Don’t rush to grab a blind person’s arm — ask first if they want help. Not if they need it. Wanting it makes all the difference.

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.