Learning to forgive yourself for the life you can’t live anymore
MG may take certain abilities, but it cannot touch your worth
Let’s be honest right out of the gate: Grief stinks. It’s messy, exhausting, and sneaky. And if you live with a chronic illness like myasthenia gravis (MG), grief isn’t just about losing people you love; it’s about losing versions of yourself you never thought you’d have to say goodbye to.
Here comes the tough love part: You can’t keep living in the “I used to.” I used to run and swim for miles. I used to work long shifts as a medic in the U.S. Army and then as a business owner. I used to go out dancing. That soundtrack of “used to” can trap us in quicksand. The more we replay it, the deeper we sink. At some point, you have to stop measuring your worth against the body and abilities you no longer have. That comparison isn’t just unfair, it’s cruel. And you’re the one holding the whip.
That doesn’t mean it’s simple. Grief is a process, not a box you can tick off like a chore. It hits in waves. Some days, you’ll wake up feeling almost hunky-dory, ready to face the world. Other days, the smallest reminder of what you can’t do anymore will knock the wind right out of your sails. I’ve cried over things as small as not being able to carry groceries, and as big as realizing my old career was no longer possible.
It’s OK to grieve, but keep moving forward
Here’s the truth I wish someone had told me sooner: It’s not weakness to grieve yourself. It’s humanity. You are allowed to mourn the life you thought you’d have. Pretending you’re fine only piles shame on top of sorrow, and shame is heavy baggage to haul around with already tired muscles.
But grief is not the final destination. At some point, you have to give yourself permission to forgive yourself. Forgive yourself for the naps. Forgive yourself for the unwashed dishes. Forgive yourself for saying no when your heart screamed “yes” but your body said, “Not today.” This isn’t giving up, it’s adapting. And adaptation is a strength.
Acceptance comes slowly, like sunrise through fog. It doesn’t mean you like what happened to you. It means you’ve stopped fighting yourself about it. I’ve had to tell my inner critic — who’s quite the loudmouth, by the way — that resting isn’t laziness, it’s medicine. Saying no isn’t selfish, it’s survival. Using mobility aids isn’t giving up, it’s giving myself the freedom to still show up for life.
The compassion part is this: You are still whole. You are still valuable. You are still here. MG may take certain abilities, but it cannot touch your worth. Your worth is not measured in miles walked, hours worked, or chores checked off. It’s measured in the love you give, the resilience you show, and the way you keep finding joy, even in the cracks.
So, yes, give yourself a little tough love when you catch yourself stuck in the “used to” loop. Gently remind yourself that comparing the past with the present only keeps you chained. Then, pour compassion over those raw spots. Treat yourself like you would a dear friend who is hurting. Speak kindly, rest often, and celebrate the little wins.
Forgiveness isn’t a one-time deal. It’s daily. Sometimes hourly. But each time you practice it, you loosen the grip of grief just a little bit more. And eventually, you find yourself moving — not perfectly, not painlessly, but forward.
And forward, my friends, is 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.
About the Author
Ben Olivarez
I read the subject line after driving home from my IVIG infusion. My emotions crashed, and the tears rolled. It’s been a rough few weeks—a roller coaster of weakness levels and of body pain that just comes with it.
I’m usually a push-through, get-it-done kind of guy. I was diagnosed with oMG in the fall of 2022. Still am—oMG, triple negative. The weakness and pain are really tough sometimes.
I know MG hits many people even harder. I get that. And I know learning to forgive myself is healthy. I do—bit by bit. But taking those steps feels like giving in. Like letting go of something I’m fighting so hard to hold onto.
I guess I need to fully mourn the “used to”—the life I had—and learn to cherish the good days more. Really enjoy them. Not just survive them.
Thank you Shawna Barnes! Thank you MG News!
Shawna Barnes
Hey Ben. I'm glad you're here. Big emotions still hit me and I've been dealing with this since 2017/2018 for a formal diagnosis but symptoms started during my medical retirement from the Army in 2011. I think the think to accept, or acknowledge, is that the grief process is ongoing. You'll have good days and you'll have sh*t days. And days where you want to scream at the top of your lungs about how unfair it is. And the truth of the matter is that it's all warranted. Give yourself permission to feel the feels, accept it, and then find ways to still get it done that won't cause symptom exacerbations. Acknowledging and accepting that you have oMG isn't a sign of weakness or giving in; but an indication of strength. It takes courage to look the monster we're fighting in the face and fight back. We just have to fight back strategically. If you haven't checked out the forums yet, I'd really encourage you to do so. It's a great place to give and receive support from people who get it.
Steve Patterson
Well, this is a subject that definitely needs to be addressed. I know that once my MG was fully diagnosed, and I started noticing that I did not have the ability to do things like I used to has and sometimes still does bring on rounds of depression as I start thinking More about things that I can’t do and less about the things I can. It is very hard to accept the limitations of what’s your body allows you to do sometimes. For me, I was always very outgoing and did a lot of different things that I no longer can do, and it has been very hard for me to accept. There were many days in the beginning, and I would literally sit down and cry as the wave of those things and limitations became reality. I am learning these days to be a little bit more lenient on myself, but I still have a ways to go because I do still have days of depression where I simply cannot accept The fact that there are things that used to be simple for me to do have become very difficult and some that I can no longer do to accept that is very hard for me
Shawna Barnes
Hey Steve, I'm glad you're here and sharing with us. It is definitely a hard pill and diagnosis to swallow. Especially if you used to be active. I get it. I wish I had better words of wisdom, other than the platitudes of "you're not alone". If you haven't yet, I'd encourage you to jump over to the forums. There are some great discussions happening over there and hundreds of people that can empathize. If it helps, the grief never really goes away, it just gets easier to acknowledge and keep pushing forward. At least for me.
Beth Kelley
Wonderfully written and so true! Thank you!!