Those of us who are active online with the Myasthenia Gravis community have been working our social media tails off to get #ihaveheardofMG trending. Sandra Hardin, an MGFA Walk volunteer started the campaign. It’s simple – just a poster or an online post saying why you have heard of MG, what it is, ending with the hashtag #ihaveheardofMG.
MG is tricky. It’s hard to see. People who are very symptomatic look drunk. There are an estimated almost 100,000 MG suffers in the United States alone. Yet many people have never heard the name.
I have a love/hate relationship with the internet. I hate it when it is an avenue for cowardice bullying, hours of endless mind numbing clicking and browsing. I hate when I sit down to look one thing up and all of a sudden 30 minutes has passed. My husband hates it too – he hasn’t had social media in 3 years, and he rarely misses it.
But I love it for its ability to connect. When I was diagnosed, I was 11. It was in a pre-facebook time. AIM was pretty popular (ha!), but it didn’t broaden my community at all. It just helped me keep in touch with friends when I was too sick to hang out with them. Social media now has given so many chronically ill people a true community. I never joined a physical support group, but when I discovered last year how many online MG support groups there were, my world changed. I started speaking up for MG, for patient rights and advocacy, and was connected to thousands of others across the country and globe who, while unique, shared a collective experience that isolated me for over a decade.
Being sick is lonely. I allowed being sick to construct emotional walls to protect me from snide comments, from disappointment, and from failure. I never knew how to advocate for MG awareness when I didn’t know anyone else who had it. Now I know thousands who have it. And we are coming together to say that we need more communities – the ones that exist outside the internet – to hear about MG. And not in the lame way that it is glossed over as some freak disease cured by a pill (Season 2 of House), or as the “thank God it’s not ALS” way of Empire. MG is real. It is serious, it is deadly, and it has no cure. And despite the rising numbers of MG patients and the new research trying to find the cause… people still look at me like I just vomited when I tell them the name of what I have.
You don’t have to understand it all. But I just need to be heard. I need you to be able to say “Oh yes, I have heard of MG”.