I was diagnosed with myasthenia gravis, or MG, in 2021 when I was in my early 20s. My journey began at a friend’s birthday party when I noticed my face wasn’t moving properly and my eyes felt strange. I didn’t think much of it at the time, but these occurrences started becoming more regular. Within weeks, I struggled to get up flights of stairs, working out became a battle and cramping in my hands made writing at school nearly impossible. I remember thinking, “something wrong is going on here.”

A couple of months in, I sought help at my university’s health system. The issues with my face led them to suspect Bell’s palsy. I thought it was strange given my symptoms were symmetrical, which is not typical for Bell’s palsy. Before I even could make an appointment with a neurologist, my symptoms worsened, prompting me to drive to the ER. There, they tested to see if I had a stroke (fortunately not!) and eventually, I was tested for MG. Blood work would confirm the diagnosis. Until then, I had never even heard of MG.

It’s crazy! For a disease that affects approximately 100,000 people in the U.S., my MG diagnosis came relatively quickly–about 8 hours from entering the ER to receiving confirmation. I know many people struggle for years to get an accurate diagnosis, seeing multiple neurologists and jumping through hoops. I’m incredibly grateful to the doctors who ensured I received the proper tests, leading to such a quick diagnosis.

The Emotional Rollercoaster and Navigating the Information Void

Despite the rapid diagnosis, my MG journey began with a rollercoaster of uncertainty. While still in the ER, I instinctively turned to social media for answers. I went on TikTok, my “go-to” for real-life stories. The first video I saw was a woman standing up from a wheelchair, declaring that it was her first time walking in five years. I broke down, fearing this diagnosis would change my entire life. “Am I going to be in a wheelchair?” I asked, and doctors could only answer, “maybe.” This was terrifying, especially as I was a student supporting myself through college, fearing for my education and ability to work. But as I kept scrolling and seeing others walking, a flicker of hope emerged.

This initial social media search revealed a mountain of misinformation. Social media, while a source of lived experiences, can also be confusing and frightening. And it’s easy to go down the “Doctor Google” rabbit hole, where worst-case scenarios dominate and few answers are concrete.

When searching online, I’ve learned to seek out reputable websites, avoiding clickbait or sensationalized headlines. I cross-reference multiple sources to ensure information isn’t biased. Crucially, I use what I find to inform my conversations with my doctor, recognizing that they know my personal journey best. If you have concerns about living with MG, always consult your doctor.

Empowering Others Through Authentic Stories

Seeing the lack of balanced information, focusing solely on the challenging aspects of MG, I felt compelled to act. I started making TikTok videos to be the voice I desperately needed: Sharing the struggles and the triumphs of living with MG. I was motivated to show people that not everyone’s journey involves being comatose or wheelchair-bound, as many of the videos I saw suggested. My channel, @MakeMGyourbitch, showcases what my life with MG truly looks like, offering real-life stories and day-to-day experiences to empower viewers.

Sharing these unfiltered experiences online has had a profound impact, showing me that I’m not alone while building a bridge of understanding for others. The response has been overwhelmingly positive, reinforcing the importance of my advocacy work in raising awareness.

However, social media also has its pitfalls. Extreme highs or lows can lead to comparisons and feelings of inadequacy or despair. Remember, everyone’s experience is unique, and that’s perfectly okay. If you have concerns after seeing someone else’s journey, talk to your doctor. And don’t feel that you have to settle if you aren’t getting what you need.

Advocate for Your Health and Actively Partner in Your Care

My biggest message to newly diagnosed patients is that “the first couple of years are the worst.” It’s a time of unpredictability, intense appointments and figuring out medications and flare-ups. I cried throughout my initial doctor’s visits since they could not offer definitive answers. My early years involved frequent ER visits, struggling to walk and missing classes. Collapsing mid-set at a music festival taught me my limits. Understand this intense period is not your permanent baseline. You can gain control!

Your doctor gets just a brief snapshot into your life with MG. You must advocate for your health! I maximize my time with my neurologist by speaking up about my needs, medications and side effects. Being an active partner is essential, and if you’re not getting what you need, seek a second opinion. Consistent care requires constant advocacy!

Connecting with others who share similar experiences helped immensely. That’s why I chose to start my handle and partner with Johnson & Johnson on @You_Me_and_MG an Instagram community for people with MG. Through these channels, I’ve found validation, practical tips and emotional support from others living with the disease, helping me feel less alone. My friends also provide incredible support, doing their own research and accompanying me on my visits.

Live Your Best Life with MG

The biggest message I want to share with others is that MG does not define who you are. It does not dictate your life. It presents challenges, but you’re strong and powerful! You can achieve your goals,

even if your path is unconventional. Adjusting my perspective, accepting my limitations and giving myself grace helps me live my best life.

As an advocate for the MG community, I’m proud to share my story and connect with others. Through collaborations like You, Me and MG, we create a supportive environment where individuals can share authentic experiences and provide crucial information and understanding to those who need it most. When it comes to MG, community is invaluable!

Megan is a paid partner and collaborates with Johnson & Johnson on @you_me_and_mg.