Living the disease progression no one prepares you for
It's not just physical; it’s emotional, psychological, identity‑shattering
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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.
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.
Terri Johnston
Hi Shawna, as I was reading this, I could feel my heart drop, really kind of sink into my stomach. Just when we think we can't go on, something drives us to go forward. Like your post. I'm AChR, and I found out how quickly stress attacks MG but this isn't about me, lol.
Truely, I wish your neuro has something for you to try that will ease your suffering. Fingers crossed!
Miguel Penas
Awesome Shawna, couldn’t be more on point. Sadly that’s our reality, but as they say where I’m coming from, “Machito hasta el final!”; something like Dye Hard 🦾🙏🏿
Cindy Sylvia
This is where I am at. So much of what you have shared is if I had written it myself. I have said, it feels like I am slowly watching my body fail which in turn there goes my independence. Losing myself a little more each day 😢
Frank
I am sooooo very sorry you are experiencing this. How awful!
I’ll be sending energy not only for an amazingly effective treatment plan to become available asap, but that you are filled with the equivalent love, support, understanding, and good humor you have shared with so many of us!! My heart hurts for you!
Frank
Rosana Taddei
Don’t have a diagnosis yet but after a second flare up after hip surgery its clear to me this is gmg. God help us all living with this debilitating, life altering condition!
Karen Kerby
I am so grateful for your writings. It helps to not feel alone in this thing called MG. I am so hoping and praying for a new treatment that moves you back into the place you were. Hugs.
Susan F Klinger
I'm the majority of cases Myasthenia is not a progressive disease. Yes, in the beginning your Ocular MG may progress to generalized MG. But I've had MG now for over 22 years. It is the same as it was 22 years ago and my treatment is the same.
Parkinson's is a progressive disease with distinct changes from one stage to the other. So is ALS. MG can be mild to severe and your doctor should be able to determine where on the GMG scale you fall. But don't all MG is progressive. I've been involved with the MGFA since I was diagnosed dnd I have met many many MG researchers over the years. Do your homework before you claim it's a progressive disease for everyone.
Danielle Smith
I used to think that it was not progressive until I hit the 35yr mark (diagnosed in 1986 at 19yo). My life was normal and the gMG was controlled all those years until I was 53, in 2020, I had a crisis, it progressed rapidly, hasn't been stabilized since and it's refractory to most meds now. Be grateful for every good day, you cannot know what turns gMG may make in your life.
Miguel Penas
As you said Susan, is not progressive on everybody; but in some it is. I’m “double” seronegative diagnosed just 5 years ago after a long very frustrating run finally through electro conductivity tests which I hope no one should go through. After “stabilizing” treatment I’ve been able to handle my condition, but I can tell you guys it is progressive(at least in my case). What have enabled me to deal with it, is my approach to it, the way I’ve been dealing with the challenges the Shawna mentions, there is where we can win or lose the battle. I definitely appreciate every single moment of my life and try to keep my mind as clear and calm as possible; when you learn that depression is part of your life then you can handle it better, even when you learn that is better to cry in the shower so your loved ones suffer less. It’s just your cross and you have to carry it. But yes, it is progressive.
Lisa
Incredibly honest and spot on article Shawna! I really appreciate your vulnerability. I can relate to EVERYTHING you shared, and still deal with fear and body grief 2 1/2 years after my MG diagnosis.
doug marstall
im 74. 15 years with this. im seronegative so of course i was nuts. fo the last 2 years ive been diagnosed by a great doctor at Stanford currently trying cellcept and im on second round of vyvgart infusions. no permanent or consistent results yet.
i continue to remind myself as roseanne rosannadanna said
“Its always something”
i never have to look far to see someone much worse off
that said i completely agree with you. THIS SUCKS ON SO MANY LEVELS
good luck. keep me informed
“
Benjamin Gelber
I retired from neurosurgery after 45 years of practice. A year later myasthenia Gravis hit. I’m doing ok on treatment but the future is uncertain. I’ve been inspired by people I’ve met who, despite long term disease, have been able to live productive and fulfilling lives. Stick with it!
Tamara Leonard
You just put my into words that I hadn’t come up with
Catherine Weatherbee
I do it alone scary
Tara Drouillard
Omg this couldn't of been said any better about how you feel about the new unwanted "MG" life! I struggle everyday with MG and lately I feel like my life just keeps continuing in a downward spiral that hasn't stopped, or like the feeling being stuck in some deep black hole and you see the light at the end of the tunnel but you keep trying to club out towards the light but it's like Everytime you think your almost to the light this black tunnel just continues and seems to never end! I myself was diagnosed with MG when I was about 38 years old and now I'm 45 yrs old and still Un'accepting of it and still after s
All these years not coping very well still, and still don't want to accept that this is my life now from going to my full-time job everyday, being a single mom and raising my son doing all the football game volunteering during his games, and having a normal daily routine like everyone else! Then overnight now it feels like, I'm here with nothing to look forward too anymore the next day or, waking up in the morning and getting myself ready to take on the day to go to work and then get off work and go home, and then doing my single mom life with my son, etc. and then here I am now feeling nothing but absolute misery! I miss me, I miss what I now just call' "My human life", and feel like I've turned into some other type of nonhuman or alien person I call it, I no longer have nothing like a normal daily routine or life to wake up too anymore, I no longer am able to work because as I tell people that the next day I may feel drained, or I may not everyday is always unpredictable for me anymore. Today I feel fine, tomorrow I might feel fine inside my head, but my brain ends up being an asshole asi always say to where I'll mentally feel fine and all there till I need to speak and then slurring words, and people think I'm all messed on drugs or alcohol which I don't do. Or my legs feel as if they want to buckle and I know I may need to try and find somewhere to sit down before I collaspe and 99% of the time I lose beating my MG brain to the punch trying to get myself a seat but fall down Everytime before I can do so myself, I've literally take all my meds I'm prescribed and every once in a great while I go through a 1 to 2 week "Crisis" is what they call it with the whole "Temporary Body Paralysis". And I can walkk, talk, feed myself, move any part of my body. If heard my parents even talking about putting my in some type nursing home at one point also! Wow! They just didn't feel like dealing with me and myMT issues, and it really is upsetting to hear your mom and dad saying pretty much they just want to deal or help me or take care of me, and just pass me off, or get rid of me, or I'm nothing but an inconvenience when they should be the people I should be able to trust the most with my life or any type of medical decisions if I'm able to speak for myself. This all has been nothing but depressing, shedding tears and crying literally every day of my life, I've become a huge emotional wreck and never felt so alone because nobody really has a clue nor don't understand anything about what I'm going through anymore with my lifestyle I have no choice but to live with weather I like or not! I can explain over and over again to them or anyone else just to hear from people that I'm making all this up and lying, or if my illness is even liget??being told by people I'm making lies up and I'm fine that there's nothing wrong with me just because I look fine on the other side but no one can see on the inside how much I struggle each day of my life anymore.