Sometimes myasthenia gravis makes me feel like a disappointment

Every parent, partner, and friend wants the best for their loved ones. We hold high expectations for them, wanting to see them become president of the world! But I’ve often felt like I’ve failed to meet those expectations — especially as the oldest daughter, the go-to best friend, and of course, the one and only love of my boyfriend’s life. (Ha!)

When I started adapting my life to myasthenia gravis (MG) — reducing physical effort, scheduling breaks, changing my career path, and prioritizing rest over adventure — I saw something shift. I saw many little sparkles fade from the eyes of the people I care about. And I genuinely started to feel like a disappointment.

More than once, I’ve heard loved ones say, upon meeting new people, “Oh, this experience would be lovely, but Sarah can’t join because she has a ‘condition.’” Or worse, the infamous: “If it weren’t for MG, you would’ve been great at …”

But here’s the thing: Even if I didn’t have MG, I’d still face other challenges. Everyone does. Whether it’s mental health struggles, financial barriers, beliefs that hold us back, or responsibilities we didn’t choose, nobody has a perfectly smooth path. So why keep tying my missed potential to a fantasy world where MG doesn’t exist?

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To be fair, I understand where this mindset comes from. I experience it, too. I’ve been excited about plans — activities, trips, new adventures — and had to cancel or reshape them at the last minute. So I can only imagine what my loved ones feel. I don’t know exactly, but I can guess, and I’m sure it’s hard on both sides.

I sometimes wonder: If I had a child in a world where I knew nothing about chronic illness, would I feel disappointed if they were diagnosed and couldn’t fulfill the dreams I had for them? Would I feel like those aspirations had been stolen?

That’s when I had a realization: I’m not the disappointment; MG is. But somehow, I feel the need to defend it. Because as much as I see MG as my bitter and best friend, I truly believe even MG wouldn’t have picked me if it had the choice. I’m way too stubborn for it.

I’m not interested in living in a fantasy world where everything is perfect. That world doesn’t exist, not even for healthy people. But I also don’t understand why it’s considered failure to change, adapt, and shift my goals according to what my body can realistically handle.

I’ve been living in this paradox since the moment I was diagnosed, and I still don’t know what the final outcome is. But I’m sharing this now to raise awareness among families, friends, and even partners.

Yes, MG and other chronic conditions can be disabling. Yes, they can crash your expectations for your loved ones. But let’s not forget that you also have limitations. Everyone faces challenges when chasing their dreams.

So, please, don’t feel sorry or disappointed that I’m not an astronaut. Because, well, you’re not one, either.

And more importantly, life goals aren’t supposed to be fixed. No one is born to be one exact thing. That’s the beauty of being alive. Everything expands, evolves, and transforms. We are constantly in motion — growing, failing, rebuilding, and learning. And that, in itself, is a life worth celebrating.

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.