Written by Audrey Getman
September 25, 2020: The day I was diagnosed with myasthenia gravis (MG).
One month prior: I was in the emergency room (ER) after experiencing a worsening of facial weakness symptoms over the course of about six weeks. The ER providers thought I was having an aneurysm or a stroke, so they performed a diagnostic MRI, which resulted in no diagnosis. The MRI ruled out other serious conditions but didn’t answer the question of what was causing the weakness. One ER doctor said,
“I had to look this up, but I think you have something called myasthenia gravis.”
I had no idea what that was, so I left the ER with more questions than answers. I was a 23-year-old with no previous health concerns, so to then suddenly be in a body with severe weakness was devastating. After that ER visit, it took seeing several neurologists over the course of about a month to receive a formal diagnosis. Naturally, I was confused and scared at first, until I realized if I didn’t try to manage this disease first, it would conquer me–and I wasn’t about to let that happen.
Changing my outlook and accepting that I have this disease has not been easy, but it has made me grateful for the life I do get to live every day. I want to share with others living with MG three positive ways I’ve adjusted over the past four years:
Sharing my story: As a patient and active member of the MG advocacy community, I am proud to share my story and connect with others–including a collaboration with Johnson & Johnson on You, Me and MG. This community is so important because it allow individuals, like me, living with MG to share our authentic journeys and our voices to hopefully allow others looking for information to find it in a cohesive and friendly environment.
Seeking gratitude: I’m in graduate school with a debilitating condition, and I’m studying exercise science to be able to help people like me. I want to help people heal with exercise, and I wouldn’t have made this career change if I hadn’t been diagnosed and gone down the path of exercising to heal my body. This complete career shift forced me to look at my diagnosis with gratitude. It changed my life, and not wholly for the worse.
Embracing that MG does not define me: The biggest thing I want to emphasize to other MG patients is that MG does not define who you are. It does not dictate your entire life. It may have thrown in some challenges, but you are still so strong and powerful. Even if the ways you reach your goals are unconventional, you can and you will be able to reach your goals.
Being diagnosed with a life-altering chronic condition is a full-time job, and having to plan my day around a disease is not something I would have pictured for myself five years ago. MG has impacted absolutely everything about my life–from how I physically feel to the emotional and mental stress that the disease itself puts me under. Adjusting my perspective was the change I needed to live my best life with MG.
About the Author
Audrey is a graduate student from New Hampshire in her late 20s navigating a life-changing diagnosis that she received in 2020. After her diagnosis, she began sharing her journey and shifted from chronic illness to chronic wellness. She encourages others on their own journey to feel empowered to ask questions and live authentically. Audrey is a paid partner and collaborates with Johnson & Johnson on @you_me_and_mg
