When healthcare language fails myasthenia gravis patients in crisis
When I say, 'I can’t catch my breath,' that doesn't mean I need oxygen
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Breathing is supposed to be automatic. Invisible. Effortless. Most people never think about the mechanics behind it — the diaphragm pulling down, the rib cage expanding, the air moving in and out like a tide.
But for some of us living with myasthenia gravis (MG), those mechanics take center stage. They become the diva demanding to be seen. It doesn’t take long to learn, however, that the language used to describe breathing doesn’t always match the experience of a body that’s losing the ability to ventilate. I learned this the hard way during my last crisis.
The words we use to describe what we experience
Air hunger can be one of the most terrifying sensations. It isn’t wheezing, or asthma, or being winded. It’s the primal panic of trying to inhale and feeling nothing happen — like the signal to breathe goes out, but the diaphragm doesn’t answer.
The closest phrase most people know to use is “I can’t catch my breath.” That gets interpreted as anxiety, exertion, or needing oxygen. Meanwhile, my oxygen saturation is sitting at 98%, and I’m still drowning in plain sight because oxygenation is not ventilation. Ventilation is the movement of air, the act of breathing. Oxygenation is the amount of oxygen in the blood and can be an indicator of lung health.
Lucky for me, my lungs are amazing. MG doesn’t care; it destroys ventilation first. When I say, “I can’t breathe,” and someone points to a normal oxygen reading, it feels like being dismissed while suffocating, especially since my lung capacity is 122% of what’s expected. For me, when I fall into the “expected” danger zone, I’m already critical.
Chest pain is another phrase that tends to lead people down the wrong path. I’ve said, “My chest hurts,” and watched clinicians immediately pivot to cardiac questions. But the pain wasn’t from my heart. It was from my chest wall — muscles that were never meant to be primary breathing muscles suddenly doing the job of the diaphragm. When the diaphragm weakens, the body recruits backup muscles: those in the neck, shoulders, and ribs.
They pull and strain and burn with every breath. The pain is legit, but it’s the result of the problem, not the problem itself. They hurt from overuse and doing a job that they didn’t sign up for, but were recruited and volun-told to do.
Bulbar weakness, carbon dioxide buildup complicate the picture
Air stacking is another sensation that doesn’t fit neatly into language. It’s inhaling, but not being able to fully exhale — like your lungs are filling but never emptying. This feeling makes you take several partial breaths before you finally feel like you’ve gotten a full breath in and can exhale. But when you try to describe it, the closest words are “I can’t get a full breath.” That phrase often gets interpreted as asthma or anxiety.
Bulbar weakness adds another layer of miscommunication. It doesn’t just affect speech and swallowing — it affects breathing in ways people don’t expect:
- You can’t clear saliva.
- You can’t coordinate airflow.
- You can’t cough effectively.
- Talking drops your oxygen.
- Eating becomes a respiratory event.
When bulbar muscles weaken, the airway becomes unpredictable. You can aspirate your own saliva. (Been there. Done that. Have the Yankauer suction tip souvenir.) You can choke without warning.
But again, the language fails. You say, “I feel like I’m choking,” and people think food — not airway collapse, not neuromuscular failure, not the quiet unraveling of the system that keeps you alive.
The sensations of the symptoms felt leading up to respiratory distress or failure don’t match the vocabulary. There is no everyday phrase for diaphragm failure, chest wall fatigue, carbon dioxide retention, or bulbar collapse. So we reach for the closest words we have — chest pain, tightness, choking, can’t catch my breath — and hope someone listens closely enough to hear what we actually mean.
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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