How people respond to my MG, and what I wish they’d do instead
I don't need doubt or pity; I just want to be heard and believed
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Years after being diagnosed with myasthenia gravis (MG), I still find myself navigating other people’s perceptions of my disease almost as often as I navigate my symptoms. But while my muscles are unpredictable, people’s reactions seem surprisingly consistent. Most fall into three categories: those who think I’m faking, those who think I’m exaggerating, and those who pity me. None of these reactions feels quite right.
The first is probably the most frustrating. Every now and then, someone quietly assumes I’m pretending. I often wonder what they’re imagining. Do they think I choose to weaken my neck muscles until breathing becomes difficult? That I deliberately make my legs feel so heavy that I have to cancel plans I’ve looked forward to for months? I struggle to understand what they think I have to gain. Attention has never seemed worth sacrificing my independence, my energy, or the experiences I miss because my body simply won’t cooperate.
The irony is that even if someone were pretending to be sick to get attention, they would still deserve compassion rather than judgment. That kind of behavior would point to a different kind of suffering, not a reason to dismiss them.
Far more common are the people who think I’m exaggerating. They’re usually not trying to be unkind. They simply see me on a good day and assume that’s what my life always looks like. They watch me work, laugh, travel, or enjoy time with friends, and conclude that things can’t really be that difficult. What they don’t see are the constant calculations happening in the background.
Every invitation comes with the question of whether I’ll have enough strength. Every productive day carries the possibility that, tomorrow, I may barely have the energy to lift my head. MG doesn’t follow a predictable pattern, and that’s what makes it so difficult to explain. The person they see today may not be the person they see tomorrow.
I’ve always been expressive. I talk openly about my emotions and what it’s like to live with this disease. Occasionally, someone tells me I focus on it too much or make it sound worse than it is. But what are you supposed to say if you live with constant fatigue and the uncertainty of never knowing what your body will allow you to do from one day to the next? It’s just being honest. I’m not asking for sympathy by talking about my illness; I’m just asking to be understood.
Pity is the hardest for me to accept because it usually comes from a place of kindness. The people who pity me are the ones who are trying to protect me or assume I shouldn’t attempt something challenging. While I appreciate their concern, pity has a way of reducing a person to their diagnosis. It quietly replaces possibility with limitation before a person has a chance to show what they’re capable of.
What those of us with MG really need
The people I appreciate most are neither skeptical nor overprotective. They’re simply curious. They ask questions instead of making assumptions. If we’re walking together, they don’t ask if I can keep going; they ask if I want to. That small difference reminds me that I’m still the one making decisions about my own body. It acknowledges my limitations without allowing them to define me.
My fiancé understands this better than anyone. Even during a breathing episode, he stays beside me and lets me guide the situation. He asks whether I’d like my medication, whether I want to sit down, or whether I want to leave. He doesn’t assume helplessness just because I’m struggling in that moment. Instead of taking control, he gives me the space to keep mine, and that’s one of the greatest gifts someone living with a chronic illness can receive.
The truth is, I don’t always know the perfect way to respond to someone else’s illness. Whenever I’m unsure, I try to ask instead of assume. I ask what they need, whether they’d like help, or whether certain comments make them uncomfortable. Curiosity leaves room for people to tell us who they are, rather than forcing them into the story we’ve created about them.
Maybe that’s all most of us living with a chronic illness really hope for. We don’t need people to doubt or pity us. We simply want to be believed, respected, and trusted to tell others what living with our illness actually feels like.
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.
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