Marta, a life reinvented by Myasthenia Gravis at 20 years old

At just 20 years old, Marta’s life was turned upside down when she was diagnosed with Myasthenia Gravis. Her symptoms were mild, such as a drooping eyelid and blurred vision, but alarming enough to take her to the emergency room. The neurologist diagnosed her as myasthenic almost immediately, perhaps a little too quickly for her to fully take it in. In the space of a single consultation, Marta went from experiencing a few unsettling symptoms to facing the reality of a rare and complex disease.

At first, the illness disrupted the entire balance of the family. Marta was able to rely on the support of her parents and, over time, on the constant presence of her husband, who became her daily source of strength. He helps her with travel and medical appointments, but above all, he is simply there when things get difficult. This deep connection has become a true source of resilience.

At the same time, Marta also experienced a sense of isolation. At just 20 years old, some of the people close to her drifted away, not out of a lack of affection, but because they did not understand. Myasthenia Gravis is an invisible illness, and that often makes it harder for others to grasp. Marta realised that she needed to speak about it, to put her feelings into words. Little by little, this helped her rebuild her relationships and feel less alone.

Marta has learnt to organise everything with one thing in mind: with Myasthenia Gravis, nothing is ever completely predictable. She anticipates, prepares back-up plans and adapts as needed. Even holidays, which should be carefree, require careful planning. But despite the constraints, she refuses to let herself be discouraged. She continues to make plans and to enjoy the things she loves simply, but differently.

Marta says the hardest part is the emotional rollercoaster. At times, the emotions take over, and that can be difficult to handle. She tries to take a step back, to stay calm, and not let herself become overwhelmed. She does her best to focus on what is going well, on the small positive moments, and to let go of the rest. It is her way of staying balanced.

It pulls her down, as if gravity were stronger for her than for others

To describe how she feels, Marta talks about a weight, like concrete that envelops her and pulls her down, as if gravity were stronger for her than for others. On top of that, she experiences double vision, a symptom that is particularly difficult to manage in daily life. Each time, she must make the effort to work out which image is real, and which one is simply a reflection of the disease.

Marta eventually gave up salaried jobs, which were too physically demanding and too rigid in terms of working hours. By becoming a freelance architect, she rediscovered a sense of freedom, the freedom to organise her time and to strike a better balance between her professional and personal life. But she is clear about one thing: invisible illnesses are still far too often overlooked in the world of work. There is a lack of awareness, and a lack of proper protection.