The first time I started to experience symptoms of myasthenia gravis (MG) was in May 2018, just before I turned 21. Initially, I noticed my voice wasn't as strong, and sometimes my speech became a bit slurred, especially when I was tired. I dismissed it and thought it would pass. But when I started having difficulties smiling or swallowing food – alarm bells rang – I realized something was wrong and decided to visit a doctor. The misdiagnosis not only delayed my treatment but profoundly impacted my life For 15 months, my symptoms were repeatedly dismissed by various specialists who attributed them to anxiety and hypochondria. I was even told by a neurologist that there was only a 5% chance of a physical issue and was advised to see a psychiatrist. Despite my symptoms worsening, drooping eyes and difficulty speaking, I was put on medications that were contraindicated for MG and further exacerbated my condition. I constantly pushed myself to be active to combat my ‘anxiety’ as I was advised, only to find that it was the opposite of what I should have been doing for MG. I felt misunderstood and blamed myself for my symptoms, feeling as if I was stuck in a never-ending cycle of unexplained health issues. The turning point came when I finally saw a specialist who performed an EMG test, which revealed MG as a possibility. I downplayed the warning signs until I experienced my first myasthenic crisis that confirmed my diagnosis. The crisis was the most frightening experience of my life. I was lucky to be in the hospital; it was my last chance for survival. I had to be intubated. Waking up with a tube in my throat was terrifying. During those 11 days in intensive care, I was physically weak and paralyzed, unable to open my eyes or move my fingers. I was grateful for the hospital's therapist who helped me process everything and visited me daily with papers and pencils, knowing I was a design student. Being diagnosed was both a relief and a source of grief. Having an answer to my symptoms was comforting, but understanding what it meant to live with MG was overwhelming. Since then, the impact of MG has been life changing. Before my symptoms, I used to dance and was training for a 2km race. Now it is impossible. I don’t feel my body the same way I felt it before. I don’t have the same control over my legs or arms. Considering how bad the flare-up is, there might be periods of time when I am unable to work as a graphic designer. People often misunderstood my slowed speech, assuming I was drunk, which affected my self-confidence and authenticity. After the myasthenic crisis, I developed a post-traumatic response, suffering from nightmares and anxiety. It was a long journey to mental health recovery, but with therapy and healthy coping mechanisms, I've come a long way. I feared a future of constant ICU visits, but I've learned to navigate this new reality, focusing on advocating for others with MG and helping to make the invisible symptoms of MG more visible.
