WHAT IS MG?

What Most People Don’t Understand About MG

Your experience with myasthenia gravis (MG) matters. Sharing what your daily life looks like can help friends, family and your care team better understand your MG journey.

People who don’t have MG may struggle to fully understand what it’s like to live with the condition. MG often involves unseen symptoms that fluctuate from day to day and aren’t always easy to explain. Hear firsthand experiences from people living with MG and their supporters, as they each answer the question:

What do you wish others understood about living with MG?

“People think that if you have a certain disability or way of life, you need to fit within a certain box. People should try to be more caring and not judge others based on looks. If someone asks me, ‘Oh, why do you need the cane?’ or ‘Why do you need a scooter?’ I tell them everything and anything. It’s so frustrating to constantly be asked these types of questions because people judge right away and assume a disabled person should look or act a certain way.”

Aiden-Lee

Diagnosed with MG in 2010, LGTBQ+ and queer advocate and MG support group leader

“I wish others understood how MG can take away everyday freedoms like driving. I never imagined a life without driving. I bought my dream car at 25, but my eyes felt the most strained when I was behind the wheel. So, because of that, I made the decision not to drive. It just felt safer and less stressful for me. I hope for a future where I have clearer vision and potentially drive my dream car again.”

Courtney

Diagnosed with MG in 2001, reiki master and MG advocate

“Our plans must include consideration of John’s susceptibility to fatigue. We try to keep that in mind by scheduling alternate times or days for activities to allow him to rest and recover. This also might include breaking up travel time and trips.”

Mary

Mother, grandmother and MG supporter of her husband, John, who was diagnosed with MG in 2011

“One of the biggest challenges for me, especially when I’m having a flare up, is I’ve got to let go of my pride. I try my best to acknowledge my symptoms, rather than dismiss them, and try my best to accept assistance from others.”

Bryan

gMG support group member living with MG for over 30 years

“MG really impacted my dating life. When I first started dating my now husband, I couldn’t fully commit to our dates until closer to the day, when I had a better idea of how my body was going to function. Luckily, he’s a very chill guy, so we’d meet with open-ended plans. Like, maybe we’d watch a movie or maybe we’d do something more active, but we’d see that day.”

Julia

Diagnosed with MG in 2011, occupational therapist and MG support group leader

“I want people to understand the importance of attending MG support group meetings. Be sure to invite your family and friends so they can hear the experiences of others living with MG—it could really open their eyes.”

Alexis

Diagnosed with MG in 1997, MG Georgia support group leader

“Since I never know when symptoms will happen, I have to explain to others how MG is unpredictable before I commit to anyone or anything.”

Leah

Diagnosed with MG in 2015, beekeeper and International Spanish MG support group leader

“An overheated room or a hot day is my nemesis. I had a long direct flight across the country to the west coast. The plane was packed and overheated. I walked to my seat before the flight took off. By the time we landed, I couldn’t stand or hold my head up. I was also slurring my words and had trouble breathing.”

Zach

Diagnosed with MG in 2015, graphic designer and MG advocate

“Before we go out to an event or outing, I have to research the place. This way I can prepare for any fatigue caused by MG. I like to see where the benches are, if there’s going to be a lot of walking and if there is handicapped parking available.”

Victor

Diagnosed with MG in 2017, retired IT professional and MG support group leader

Leaning on the wisdom and experiences of others can help guide you in your MG journey. Want to read more stories about real people living with MG just like you?

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All MG community members featured on this page are paid contributors to MG United.

argenx, a global immunology company, created MG United to support people living with myasthenia gravis (MG) and those who care for them. By providing information on MG United, argenx aims to help improve the lives of people suffering from this autoimmune disease. MG United does not offer medical advice; always consult your healthcare team for personalized medical guidance.

The brands listed are the trademarks of their respective owners.

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What Most People Don’t Understand About MG