Invisible but real: How Diana redefined her life with MG
When Diana was first diagnosed with Myasthenia Gravis at age 35, her world didn’t fall apart, but it did shift entirely. As a nurse and mother of young children, she was used to giving her energy to others. Suddenly, she had to learn how to give it to herself too. Thirteen years later, she’s still adjusting, but she’s also found strength, balance, and a new way to live.
Balancing life one break at a time
Diana has learned to live at a different pace. Every part of her daily life, both personal and professional, has had to be adjusted to fit the unpredictable rhythm of MG. She plans her days with care, managing her energy through regular breaks and avoiding commitments that she knows she won’t be able to keep. Whether at work or at home, she listens to her body and gives herself permission to slow down. It’s not about doing less, it’s about doing what she can, when she can.
Family life, reimagined
The early years after diagnosis were especially tough. Her children were still small, and she struggled with not being the active, hands-on mother she wanted to be. But her family adapted together. Her mother stepped in, and even her children learned to help out in small ways. Looking back, she sees that time not as a loss, but as a moment when love and support reshaped their roles. They didn’t give up; they grew stronger.
Restful holidays and flexible plans
Planning holidays now requires care and flexibility. Diana always thinks ahead: scheduling rest days, limiting long drives, and avoiding activities that require too much walking or physical effort. City visits, shopping sprees, mountain hikes : these are things she loves, but often has to skip. “I plan for rest,” she explains, “not for doing it all.” Even with the best plans, she knows she might need to adjust last-minute depending on her energy that day, and she’s made peace with that.
Staying social with compassionate boundaries
Despite the fatigue, Diana tries to keep her social life alive. She commits to events and to her volunteer work with a hospital clown association, but always reserves the right to cancel if needed. Sometimes it’s frustrating, but people around her understand. Her friends have stuck by her, even when she’s had to explain, again and again, why she needs more rest than others. That understanding, she says, makes all the difference.
Working differently, living fully
Myasthenia forced Diana to change her career path. Night shifts were no longer possible, and she lost the financial benefits of hospital hours. But instead of giving up, she reinvented her work life. Now a freelancer, she sets her own schedule, mostly working from home and choosing tasks that are less physically demanding. She doesn’t know if she could ever return to a traditional job with fixed hours. For her, breaks aren’t optional: they’re essential. Freelancing has become the key to maintaining both her health and her professional identity.
Stories like Diana’s remind us that adapting is also living.
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