The pain of having myasthenia gravis is real, but there is joy in it, too
The disease has changed my relationships with family, loved ones, and work
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I have sometimes been told that I must be happy to have myasthenia gravis (MG). Maybe this is because I appear too comfortable with it, or perhaps it’s easier to think I’m happy than to face the reality of living with this invisible disability.
Hearing such a thing used to hurt me deeply and anger me, but the idea started to echo in my mind: What if I found a way to make this disease an ally, a friend, something I could become comfortable with? Could that transform my life?
It sounds easy, almost naive, like a type of medicine that doctors haven’t discovered yet. It carries a bitter taste of grief, like trying to live life to the fullest after losing someone you love. The only difference is that the person you are grieving is yourself.
With MG, even breathing can be painful and a challenge. Yet I couldn’t help but notice the small wins and the unexpected benefits this disease has brought to my life.
An unexpected ally
The first benefit I observed is the deeper connection I now have with my loved ones. For example, this week, I realized that if I’d been healthy, my sister might never have had the chance to take on certain responsibilities, like driving our family car. As the eldest, it would’ve naturally been my role. But MG shifted that balance, and I now rely on her for things I once took for granted, like turning on my respiratory machine, packing my clothes when we travel, and helping me wash my hair.
This has changed our relationship. I no longer see her only as someone I want to protect, but as someone who protects me, too. There is something deeply beautiful in that balance. I think about moments like our trip to Paris, where she sometimes pushed my wheelchair. We laughed, explored, and even enjoyed the priority lines together. Those moments, shaped by MG, became ones filled with closeness and unexpected joy.
My relationship with my fiancé has also deepened. MG pushed us toward a level of communication I might never have reached otherwise. While he has always been an excellent listener, I learned to express my needs better, and our conversations became more open, honest, and intentional.
MG has also filtered my friendships. Some people drifted away when I started turning down plans, while others stepped forward and found ways to include me. Those who stayed became invaluable. Their presence is no longer based on convenience, but on care.
My relationship with work also changed. It may not be the healthiest relationship, but I am deeply attached to what I create. I work with intensity because I am constantly aware that I might not always be able to. MG has made me afraid of losing simple abilities like breathing or walking, and in return, it has made me appreciate every task I am still able to complete. Every deadline I meet feels like a victory. Every project I finish feels like I have conquered something bigger than work itself.
And then there is my relationship with myself.
Living with MG forced me to look inward, to listen to my body, my mind, and my needs in ways I never had before. I learned to value my comfort, to respect my limits, and to appreciate every small function my body still offers me. I am more aware, more present, and more connected to myself than I ever would’ve been without MG.
These changes do not make the disease easier. Living with a chronic condition still requires constant adaptation, as it is a life filled with challenges and quiet battles. But taking the time to notice and enjoy the small moments of happiness, even when they are shaped by the illness itself, can be life-saving.
Today, I choose to focus on those moments — not because the pain isn’t real, but because the joy is.
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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