Turning down activities – whether it’s a workout, a dinner, or a last-minute plan – isn’t always easy. But for Diana, it’s a conscious choice to protect her well-being. She knows that overdoing it has real consequences. Even if the trade-off is frustrating, she has learnt that pacing herself helps her maintain a functional, fulfilling life. “Saying no,” she says, “is a strategy. Not a weakness.” It’s how she continues living without letting the disease define her.
When the diagnosis hits hard, and then life finds a new rhythm
Diana still remembers the night her vision started to double. She didn’t know it at the time, but that was the beginning of a long journey with Myasthenia Gravis. At 35, she received the diagnosis within a week, thanks to a sharp neurologist – and it changed everything. What followed was a difficult, exhausting chapter she calls “the acute phase”, where each day was a battle against muscle weakness, slurred speech, and a head that could barely hold itself upright. But with time, surgery, and treatment, she found moments of calm and even years of stability.
From crisis to chronicity
The first year and a half was brutal. Symptoms appeared daily: diplopia, dysphagia, and a general physical weakness that made even simple movements difficult. Eventually, with immunoglobulin treatments and a thymectomy, her condition improved. For six or seven years, she lived in what felt like remission – no symptoms, though she continued with low-dose medication. But the disease slowly returned, especially the double vision, which is now a constant part of her life. “My symptoms are stable,” Diana says, “but they’re always there, just fluctuating.”
Energy is a currency, and she manages it carefully
Living with MG means learning to manage energy like a precious resource. Diana has developed strategies to cope. She knows that going to bed early can make the next day manageable. She carefully chooses when to attend social events – and when to say no. Being a freelancer helps: it gives her the freedom to take breaks, rest during the day, and adapt her schedule. Still, some sacrifices are necessary. “I love being active,” she says, “but sometimes I have to give up even the things I enjoy, just to avoid crashing later.”
Saying no is sometimes the smartest strategy
Support starts with understanding
Diana strongly believes in the power of support – but also in the importance of education. Her advice to anyone close to someone with MG? Learn about the condition. Read. Ask questions. And more than anything, don’t face it alone. She encourages newly diagnosed patients and their families to reach out to national MG associations, like the Italian one she’s involved in. “Associations know what the path looks like,” she says. “They can offer not only information, but real strategies for living better with this disease.”
Living fully, even with limitations
Though her symptoms have returned and continue to challenge her, Diana doesn’t consider herself defeated. She works, raises her children, and moves through life with quiet strength. MG is invisible, yes – but its impact is very real. What Diana shows is that resilience isn’t about pretending everything is fine. It’s about adjusting, speaking up, and taking care of yourself without guilt. “You’re not alone,” she says, “and you don’t have to figure it out by yourself.”
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EU-UNB-25-00064 – Date of preparation: July 2025
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