Navigating your career with Myasthenia Gravis: Jihane’s story
A year of rest and resilience
For the first time since her diagnosis, Jihane Sayadi-Herniere, diagnosed with Myasthenia Gravis, had to take a full year off work, all because of a simple flu. She recalls, “I ended up in intensive care, and after that, it was very difficult to get back up.” For someone living with Myasthenia Gravis, recovery is far more complex than for those without a chronic illness.
Moreover, having a five-year-old, “a little germ with legs,” as Jihane lovingly calls her daughter, means an endless stream of potential infections at home. Despite taking precautions, sometimes falling ill is unavoidable. Life with Myasthenia Gravis requires constant vigilance, yet even then, unexpected setbacks occur.
Adjusting to part-time medical leave
Jihane has returned to work on a part-time medical leave basis. In her managerial role, this transition has been challenging. Being regularly absent from the office has led to her unintentional exclusion from key projects and decisions.
Now, she focuses on smaller projects and tasks that can be completed in shorter periods of time. The unpredictability of Myasthenia Gravis poses a unique challenge as she cannot always guarantee her availability. This lack of continuity makes it difficult to fully reintegrate into her professional life.
Advocating for inclusion at work
Jihane is a passionate advocate for understanding and inclusion in the workplace, particularly for employees with chronic conditions. She emphasises the need for trust and flexibility from employers.
Remote work is one solution she strongly supports. For jobs that don’t require physical presence, working from home can help employees preserve their energy. Driving to the office takes effort that could be used on work tasks instead.
Myasthenia Gravis’ impact beyond work
The disease doesn’t just affect Jihane’s professional life. It touches every aspect, including intimate relationships. This is an area she feels is underexplored in medical literature. “Living with Myasthenia Gravis means constant fatigue and pain,” she shares. “It’s not the kind of everyday tiredness people usually experience. Imagine muscle aches every time you hold a plate, brush your teeth, or shower. It’s mentally and physically draining.” In relationships, understanding and empathy are crucial, as Myasthenia Gravis shifts dynamics and requires partners to adapt.
The evolving nature of Myasthenia Gravis
According to JIhane, one of the complexities of Myasthenia Gravis is its variability. She has observed how her symptoms have changed over time. “Myasthenia has such a wide range of expressions,” she says. “Each person’s journey is unique. There are as many Myasthenia's as there are Myasthenics.” This variability makes early detection and management particularly challenging.
Moving forward with strength
Jihane’s story highlights the resilience required to live with Myasthenia Gravis, as well as the importance of fostering understanding and flexibility in all areas of life. From the workplace to personal relationships, her journey is a testament to the strength and determination of those navigating chronic illness.
Every story has something to teach us.
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EU-UNB-25-00023 – Date of preparation: May 2025
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