Friends holding phones open to social media, meeting in person with clear joy.

Thanks to Social Media, I Met a Friend With MG in Person

Last updated: September 2022

After 24 hours in the hospital for slurred speech, a drooping eye, double vision, and overall weakness, I had all clear tests. My frustration was rising with nurses about why they wouldn't release me to go home. It was the beginning of COVID-19, and my anxiety was unbearable. I knew I had a high antinuclear antibody count and was at higher risk of complications.

Finally, a nurse mentioned they were looking into myasthenia gravis (MG). I had never heard of such a disease. The instant she left the room, I grabbed my phone and looked online at what it was, and my heart sank.

I saw that 14 to 20 per 100,000 population are diagnosed with MG. The isolated sensation hit like a brick. Knowing I was one of so few was crushing, and I was in disbelief that I could be diagnosed with a chronic condition so young. Grief consumed me. I felt that because I had a chronic illness, I suddenly wasn't normal anymore, that people would view me differently.1

MG on social media

The most profound urge inside of me was saying I had to get out of the spiral I was falling into of isolating myself from others. I started following people on social media, hopeful of finding people going through similar struggles that I was.

A few months before my surgery, I came across a girl who had put #thymectomy on one of her posts. She had emergency surgery to remove a tumor in her thymus gland that doctors thankfully detected when they gave her an MG diagnosis.

I vividly remember following her recovery journey, and for the first time, I had hope that MG would not take control of me and my life!

Finding inspiration

She got back to work and keeps going despite her body not always cooperating. She hasn't let MG stop her passion for running, and climbed Mount Kilimanjaro not even 2 years after her surgery!

But it isn't what she accomplishes that inspires me. She faces MG courageously and hasn't let it halt her life. She is determined to use her experiences to help others by publicly sharing her path to figuring out how to live with a rare chronic disease.

She reminds me that grieving can't make things go back to normal, and we can never redo a day once it's over. Happiness is a chosen perception that does not depend on our circumstances, but on how we process things and let them impact us.

Meeting them in person

One day I opened my phone and saw a message from her. She would be coming to visit family near where I lived. I was elated! I was finally going to meet someone with MG, and I couldn't have been more excited to have a face-to-face conversation with someone to who I was similar in many ways.

I never imagined we'd hit it off as well as we did! I usually have anxiety in social situations, but not with her. Our conversation flowed in all directions as if we hung out all the time.

After almost 2 years of being diagnosed, I finally had a conversation where there was no desire to filter myself. I had someone to talk about my life with, MG included, and it did not make things awkward, create a negative vibe, or come across as a cry for sympathy. After leaving, I realized how amazing it was to have an opportunity like that.

The benefits of social platforms

There would have to be around 10,000 individuals in a room to find 2 people diagnosed with MG. And the likelihood of running into someone with MG and disease popping into the conversation is highly improbable.

I strongly encourage everyone with MG to give social media a chance. It may seem daunting to put yourself out there, or you might have an experience where people weren't very positive and encouraging. Not every platform is the right fit for everyone.

You may prefer support groups via video calls or an online discussion where you can post a comment, and even anonymously if you please. If you stick with it, you will find a social page that benefits you.

Learning from others and their experiences can be transformative in not letting MG hinder your growth as an individual. We are fortunate to be in a time when the internet and social media can allow us living with rare diseases to connect and interact!

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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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