Daily Life with MG: Perception Versus Reality

By Deborah Vick

3 min read

In order to spread awareness about myasthenia gravis (MG), I think it's essential to delve into the perception of MG versus the reality and shed light on the everyday lives of those with this condition. This exploration not only highlights the challenges of invisible disabilities but also underscores the profound disconnect between public perception and the reality of living with MG.

The Perception others have about MG

I have found that many people harbor misconceptions about what it means to live with a disability. The perception often revolves around limitations and dependencies, overshadowing the strength, resilience, and capabilities of individuals with disabilities. I think this skewed view fails to capture the true essence of my experience with MG, often leading to a lack of understanding, compassion, and connection from others, including medical professionals.

The reality of life with myasthenia gravis

Living with myasthenia gravis means facing significant challenges daily. This autoimmune disease affects muscle control, leading to muscle weakness and fatigue. The symptoms can be unpredictable, fluctuating in severity and profoundly impacting each moment of a person's life. Despite these hurdles, I strive to lead a fulfilling life, engaging fully in society and contributing in myriad ways.^1,2

However, the reality is often met with a lack of true understanding. Invisible disabilities like MG are not immediately apparent to others, leading to misconceptions and underestimations of the struggles faced. I think this gap between perception and reality can result in unintentional biases and barriers, further isolating those with MG.

Bridging the gap

To foster a more inclusive and understanding society, I want to shed light on these misconceptions. By sharing our stories, challenges, and triumphs, we can bridge this gap, advocating for a world where the true essence of living with a disability is recognized and respected.

The role of community and advocacy

Hope can play a vital role in the lives of those with MG. Despite the significant discrepancy between perception and reality, the MG community continues to persevere. We come together through community spaces, apps, and increased representation in advocacy efforts. It seems that many biopharmaceutical companies are also making strides to include the voices of advocates in their research. I have had the privilege of engaging with 3 different companies that are researching potential treatments while attentively listening to the needs of our communities.

Often, individuals with MG are seen as lesser or underestimated. However, we are much like superheroes rising through the ashes, one hand raised, fist to the sky, triumphantly demanding inclusion in research that considers our quality of life. I want to show the medical community our reality and our ability not just to survive but to thrive.

The Power of H.O.P.E.

As coined by Dr. Veronie Lawrence, H.O.P.E. stands for Hearing Other People's Experiences, and it is a cornerstone of my journey towards helping others understand. By sharing my experiences, I can cultivate empathy and break down the barriers of misunderstanding that surround invisible disabilities like MG.

Personally, I have faced significant challenges in obtaining my diagnosis and continue to advocate for my condition. I have heard countless stories of both challenges and triumphs that fuel my determination to push through disbeliefs and questions, striving for strength and empowerment not only for myself but for others as well.

Call to action

I Invite you to share what you hope others understand about your journey and experiences. Whether it's in the medical field when explaining your symptoms to healthcare providers, or in your day-to-day experiences - your voice matters.

Share your stories, your challenges, and your triumphs. Let us come together to amplify our voices and foster a more compassionate and understanding society. By Hearing Other People's Experiences, we can bridge the gap between perception and reality and create a world where individuals with disabilities are truly seen, heard, and valued.

Together, let's turn our hope into action and make a difference in the lives of those living with MG and other invisible disabilities.

What do you hope others understand about your journey? Share a glimpse of your journey in the comments below. Together, we can foster a community of understanding and compassion.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Myasthenia-Gravis.com 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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CommunityMember88f9f9 Member
I don't tell anyone about my diagnosis nor do I plan on it. I won't be labelled due to this. My plan is not to dwell on it and just live my life. These articles make it seem like every person diagnosed can't function. But the range of symptoms are quite expansive. No one ever talks about the people who are like me and are living with this dreaded illness. I'm proud of what I have made of myself living with MG. It's not all gloom and doom and significant disability. These columns aren't the reality for all of us. I struggle also but you make it seem like we are all disabled and that is clearly a falsehood. 
1. Deborah Vick Moderator & Contributor
 <inline-mention username="CommunityMember88f9f9" user-id="8514595"/> First, thank you for sharing your perspective so openly. I truly appreciate hearing your experiences and am sorry if my article came across in a negative light—that was certainly not my intention. You’re absolutely right; MG manifests in each of us uniquely, which is why it’s often referred to as the “snowflake disease.” Like you, I’ve worked hard to achieve success in my own path alongside MG, and I find deep pride in my work as an author, speaker, and adaptive yoga instructor. I share stories of challenges not to suggest that MG is all gloom and doom, but to create space where we can hold both our successes and our struggles. My hope is to build a supportive community where we can all feel seen, regardless of how MG impacts us individually. In my view, thriving alongside this condition means honoring our own paths—whether we share our diagnosis or keep it private, whether we face greater or lesser challenges. Your achievements with MG are inspiring, and they contribute meaningfully to the broader story of what living with this illness can look like. Thank you again for engaging in this conversation, and I hope you’ll continue to share your story. Your perspective helps expand the understanding of our community, showing that we are indeed diverse in our experiences and resilient in our own unique ways. ❄️ team member Deborah ❄️
2. Jodi Enders Moderator & Contributor
 <inline-mention username="CommunityMember88f9f9" user-id="8514595"/> We understand that it can be frustrating when the narrative surrounding certain illnesses focuses only on the struggles, overshadowing the diverse experiences of those living with them. You’re absolutely right that everyone's journey is unique, and many people manage to lead fulfilling lives despite their challenges. I would love to know what topics you would benefit from personally? Jodi, Team Member