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My Myasthenia Gravis Awakening

In this article I describe how I grappled with the emotions of learning that I had an incurable disease and how I was motivated to confront and overcome what I initially feared.

For most of us with myasthenia gravis (MG), flare-ups (also known as exacerbations) are a new normal in our lives. Some of you may be lucky and found a drug therapy that puts you into an indefinite state of symptom-free remission. Knowing that this possibility of stopping MG symptoms for extended, if not permanent, periods of my life will always exist, gives me the hope and motivation that I need to continue fighting, learning about MG, and advocating for myself. It keeps me away from the rabbit hole of depression.

My diagnosis shattered me emotionally

When I had my first flare-up and received my MG diagnosis 4 years ago, it shattered me emotionally. It was likely going to be a debilitating disease, they said, and there was no known cure. The risk of dying was suddenly and permanently elevated. I knew nothing about MG and subsequently found out that almost everyone else, including 99.9 percent of doctors I encountered, were also unaware of its existence and helpless to effectively care for me. My life instantly and dramatically changed, and I was scared.

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Every time I got over a flare-up I thought, hoped, that maybe this will be the last one. But that feeling gradually subsided over time as I surrendered to the acceptance of my condition. I learned to fuel that acceptance with self-motivation and discipline.

It took me years to understand the MG world

Helpful information was scattered everywhere. It took me years to gain an understanding of the lay-of-the-land in the MG world. Patient forums, MG terminology, insurance coverage, advocacy, gaslighting, the neuromuscular junction, reliable information sources, virtual meetings, and so on, were all new to me. I came to realize that I could not possibly learn everything related to MG. But I can try.

In the process of trying, I’ve continued to learn and remember more each day. For example, what I had learned about nerves and muscles in biology class, long forgotten and seemingly useless for adulthood and my career aspirations, suddenly woke up in the depths of my brain as I tried to understand. How enlightening something like that feels!

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Now I seek out the positives

There are things in my life, not MG-related, that now can impact my MG body in new ways that I never imagined. I came to recognize that I will now have to pay close attention to things such as food, traveling, exercise, work, emotional and physical stress, temperature and humidity, and countless other potential sources of flare-up triggers. I will need to question the risk of every non-routine action I take in my daily activities. How exhausting all that can be!

Rather than wallow in the sadness of my new medical condition, I made a commitment to myself to seek out those positive attributes in my new MG life that can potentially fulfill me and give me a reason to want to get out of bed each morning. I’m making new friends via the MG community. I’m learning how good nutrition can make a tremendous difference in getting through flare-ups and otherwise making my body the healthiest it’s ever been. I’ve even become a successful and active supporter of my local MG Support Group.

I have become more resilient

By focusing on the positive attributes, I’ve gained much better control of my lifelong anxiety disorder. This has helped me to improve and gain confidence in my coping skills, along with a new emotional resilience that allows me to better overcome life’s challenges, especially with respect to MG. And I can finally feel proud of my accomplishments. See you later, anxiety!

Just writing articles like this one is something I never dreamed that I could accomplish. In 4 short years I’ve replaced things I enjoyed but can no longer do with new activities that I didn’t realize I could do and have ended up enjoying them even more.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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