Myasthenia Gravis: Veronica's Story

Hello Veronica! When and how did you discover you had myasthenia gravis? What was your initial reaction, and how did you cope with the early stages of the diagnosis?

In September 2004, after several attempts at diagnosis following symptoms such as diplopia in August 2003 and ptosis of the right eye in August 2004, I underwent a thoracic CT scan that led to the discovery of a thymoma. From the CT report, I was informed that I would need emergency surgery the following month. I was a 17-year-old girl, unaware and naive about what I was about to experience. In October 2004, I had the thymoma removed, and I remember every moment before closing my eyes and waking up five hours later. The medical team, I think, took me to heart because they comforted me while I waited in the corridor before entering the operating room. The post-operative experience was not the best. I was transferred to intensive care, where I remained for 48 very long hours, during which time seemed to stand still. A white room without windows, through which a small signal of what was happening in the world could enter. Only a glass, covered by an aluminum Venetian blind, marked my time because, when it was opened, I could see my parents. During those hours in intensive care, they administered antibiotics that caused a strong reaction, so corticosteroids were given to contain the allergic reaction. When I left the hospital, I was ready to get back on my feet and return to doing what I did before with my peers, but it wasn't so simple and certainly not immediate. Going to school was a struggle, especially spending many hours sitting. I couldn't spend many hours standing, bending to pick something up from the ground, or carrying a backpack or anything weighing more than a notebook. Anyway, the desire to take back my life was so strong that within four months, I was practically autonomous. At that stage, my age greatly helped my condition; probably, with my current awareness, I wouldn't have been able to overcome some difficulties with the same stubbornness.

What does living with myasthenia gravis mean to you? How has it changed your daily life, and what adjustments have you had to make to manage the condition better?

After 20 years, I have managed to accept my scar, both physical and emotional, without any help other than that of my family and the people who loved me. My daily life has grown and evolved with me. At 17, I did almost everything my peers did; I got tired, had symptoms, and took corticosteroids. After the surgery, I was apparently better for several years, except for some relapses if I exceeded my limits. However, since 2018, my condition has changed and unfortunately worsened; so I adapt my days to my physical strength at the moment and adjust activities according to my fatigue. I have learned to listen to my body and know that, if I am drained, like device batteries, I stop, rest, and then restart.

What have been the most significant challenges you have encountered in your journey with myasthenia gravis, and how have you overcome them?

Perhaps this answer is inherent in the previous two questions. Anyway, the biggest challenge every day is knowing that I have to choose what to do, what not to miss, how much priority, and how much intensity to give to my goals. As I said, I modulate my activities based on the physical condition of that day. As a teenager, I didn't think that way, and to avoid missing out on anything, I paid the consequences, and at the time, it was fine with me because giving up made me sad and unhappy. Sometimes I wondered why it was happening to me, why I was forced to say no to friends, to staying out until dawn, or to nights at the disco, why I couldn't do five workouts a week or go away every weekend. I experienced moments of deep sadness and discomfort, which, fortunately, were sweetened by the wonderful people around me. My luck is and always will be them, who never let me miss anything, pamper me if they can, and constantly spoil me. Now my awareness has changed, changed as I have chosen to listen to myself and not the standard of others. Those who care about me know how to respect the most delicate moments.

Based on your experience, what message of strength and hope would you like to share with others who are facing a similar journey with myasthenia gravis?

Myasthenia is an added value. Saying it like that sounds bizarre and perhaps many might disagree. Myasthenia is that peculiarity that makes us stronger every day, makes us attentive to small things, to details. It makes us appreciate the rare moment when we feel well, makes us slow down to better see our path, the road we are traveling, in a society that lives on fleetingness and pays little attention to nuances. In moving forward slowly, you see the contours and colors, and you enjoy the view. So, I feel like telling those who think there is no longer anything worth moving forward for, that slowing down is just a way to see how beautiful life is.

Thank you, Veronica, for sharing your testimony. Your story is a beacon of hope and strength, illuminating the unique value of slowing down to appreciate the small joys of life. Your experience with myasthenia gravis teaches us that, despite the challenges, there is always hidden beauty in the journey, ready to be discovered!

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