Living the disease progression no one prepares you for

Two years ago, I was living a life that felt like mine. I had purpose and direction. I had a body that mostly cooperated. I was building things — businesses, platforms, routines, dreams.

I was moving forward.

Now, I’m not. Instead, I’m being fitted for a ventilator. Not “maybe someday” or “if things get worse.” Daily noninvasive ventilator breathing support. Every single damn day. And I have to use my BiPAP at night. My breathing muscles have decided they’re done negotiating.

There’s a specific kind of grief that comes with realizing your body has crossed a line you can’t uncross. I’ve been telling myself for months that the air hunger was just a bad day, or a fluke, or dehydration, or stress, or anything other than what it actually was: chronic respiratory decline. I didn’t want to see it, acknowledge it, or name it. Because doing those things makes it real. And now it’s real in ways I can’t ignore.

Recommended Reading

Sept. 17, 2026 News by Patricia Inacio, PhD

Ultomiris lifts quality of life, easing fatigue and brain fog in small study

Losing pieces of myself

My husband helps bathe me from the hips up. I can still wash my legs and my face, small victories I cling to like they’re proof I’m not losing everything. But the truth is, I’m losing pieces of myself in increments.

Independence doesn’t disappear all at once. It erodes, slowly, quietly, until it feels like it came out of nowhere and you’re hoping to still maintain the ability to wipe your own toosh.

I started counseling again because I’m, admittedly, not handling this well. I’m grieving the version of myself I thought I’d get to keep. I’m grieving the future I thought I was building. I’m grieving the illusion that my myasthenia gravis (MG) was managed and I was on an upward swing.

And I’m so unbelievably livid. I’m seething at my body’s decline and perceived betrayal. I’m angry at MG. Irate at the unfairness of needing machines to breathe. I’m pissed off that I’m doing “everything right” and still declining. And most of all, I am downright furious that I can’t just be who I was two years ago.

And since we’re friends and I’m being honest here, I’m scared, too.

My current treatment plan isn’t working anymore. That sentence alone feels like a kick to the crotch. When a therapy stops holding, it’s not just a medical shift; it’s an existential one. It forces you to ask questions you don’t want answers to. What’s next? What’s left? How far will this go? How much more will I lose?

I don’t have those answers. And that kinda torks me off, too.

I’m trying to maintain my PMA (positive mental attitude) because humor has always been my armor, but even that feels thin right now. I’d rather laugh than cry, but some days the laugh catches in my throat and turns into something else.

MG progression isn’t just physical. It’s emotional. It’s psychological. It’s identity‑shattering. It’s waking up every day in a body that feels less like yours. It’s watching your world shrink around you and trying to convince yourself it’s not happening.

When you don’t recognize the person in the mirror

Coping with progression isn’t graceful. It’s definitely not inspirational. It’s messy and angsty and full of days where you don’t want to get out of bed because getting out of bed means facing your new reality.

Coping looks like letting your husband help you bathe because safety matters more than pride. It looks like wearing the BiPAP even when you hate the mask and the noise and the reminder. It’s not canceling the ventilator fitting appointment even though you want to scream and pretend you don’t really need it.

Coping looks like admitting you need counseling because your heart is breaking in ways your body can’t show. It’s grieving without apologizing for it. Recalibrating your life around the body you have today and not the body you miss.

I’m trying to find myself again inside this new reality. I’m trying to figure out who I am when independence isn’t guaranteed. I’m doing my best to understand what purpose looks like when my world feels smaller. I’m trying to hold on to the parts of me that haven’t changed — my humor, my stubbornness, my drive to help others through writing — even when everything else feels unstable.

I don’t know what comes next. I don’t know what the new treatment plan will look like once I meet with my neurologist in October. I don’t know much, it feels like.

But I do know this: I’m still here. I’m still fighting. I’m still adapting. I’m grieving. I’m scared. I’m pissed the heck off. And I’m bloody exhausted. But I’m still here. And for now, that has to be enough.

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.