Working Through Social Media Anxiety Disorder
Submitted March 6, 2018 by Kyle Herschelman
I’m not the most socially outgoing person. Like, at a party, I’m not the guy hiding in the corner. I’m the guy not at the party. But when it comes to social media, I have a tendency to come out of my shell a little bit, especially when it comes to talking about my daughter Grace and our journey with Infantile Neuroaxonal Dystrophy.
I think the biggest reason for my extroverted internet presence when it comes to all things INAD is that without others knowing about the disease, we will never find a cure. That’s why I’m always looking for a way to connect with people through Twitter, Facebook and Instagram and bring them into our Grace-Filled Journey. I’m far from a social media guru, but I’ve managed to stumble across a few things that have worked for us on our journey.
I think the most important thing to consider when raising awareness for anything that personally affects you is that you have to determine the level in which you are comfortable sharing your story. My wife Mary and I are both writers, so it was natural for us to start our blog, A Grace-Filled Journey. For others, the desire to be more private may be more appealing, which is totally fine. All INAD parents are going through something that no parent would ever wish upon their worst enemy and how they get through the more trying moments is up to them.
Even if you’re not cracked up about social media or sharing things with a bunch of strangers (or even a bunch of friends), there are still ways to spread awareness about INAD. If you have an event or news item that you want people to know about it, but aren’t on social media, just email it to the INADcure Foundation at firstname.lastname@example.org. They can make sure your message goes out to the world and to the people who will want to see it the most.
If you’re on social media, but don’t really feel like putting yourself and your family out there personally, there are still ways to raise awareness. The INAD Cure Foundation has a Facebook page (facebook.com/inadcure.org), a Twitter account (@inadcure) and an Instagram account (@inadcure) and sharing some of their posts helps raise awareness for INAD. You can also share posts or tweets from other families that you follow who have pages set up for their battle.
We have a tendency to post quite a bit. We share quite a few photos of Grace on various adventures, whether it be something she did at school or a trip to somewhere special. There are some concerns about people using her photos for unscrupulous means, but unfortunately its just a negative side affect to raising awareness this way. We personally feel like the good outweighs the bad, but that is a decision each family has to make for itself. We also use hashtags quite a bit, which make it easier for people to search for similar posts. The biggest one we use is #BeatINAD because it’s simple, clean and conveys our real message in just nine little characters. We also use the #INADcure tag some and some Grace specific hashtags, like #TeamGrace (usually involving sports) or #AGraceFilledJourney.
We also like to use social media as a way to connect with those who we may never have any contact with in other ways. For example, if we are reading a book that Grace seems to enjoy a lot, we may tweet out a photo of her smiling with the book and tag the author in the post. We’ve made and maintained some pretty awesome connections with people through Twitter and Facebook, people who have supported us in the bad times and helped us raise awareness in the good.
That doesn’t mean all of our endeavors have been successful. We lobbied to get Grace a meeting with Ellen DeGeneres and had hundreds of retweets and likes on Twitter. Nothing ever came of it, which isn’t a huge surprise when you see the sheer number of people that reach out to her every single day, each one hoping that the talk show host sheds some light on their worthy cause.
We’re not going to stop trying though. We like to say that you miss 100 percent of the shots you don’t take so we will continue to reach out to those who can help us make a difference. Our most successful connections have come from those who we share a connection with. We keep in touch with a Major League Baseball player who caught Grace’s first pitch when he was a minor leaguer in Arkansas. U.S. Representative Rodney Davis is our congressman and he was willing to give a speech on the house floor about Rare Disease Day and our fight to beat INAD. His staff then shared the video of his speech on their social media accounts, a great way for new people to see our story. We made a connection with an up-and-coming chef in St. Louis who just happened to name his restaurant “Grace Meat+Three”. The food is amazing there, but the love and support that he and his staff have shown us is even better.
All of these things build up a connection with people and make them feel like they are part of your story. When they feel that way, they are more likely to help you when you need them, whether it’s by lending an encouraging word or by helping you raise funds for (hopefully) life saving research like the study that Dr. Paul Kotzbauer is doing at Washington University. No sharing a picture or a story on Facebook or Twitter won’t cure INAD, but it might convince someone to make a donation to the fight, which will one day lead to a cure.
Hopefully this has been helpful, but if you have any questions, feel free to email the INAD Cure Foundation at email@example.com or me personally at firstname.lastname@example.org. I don’t have all the answers, but we are stronger together in our search for a cure. Who knows, there might even be a party when we do #BeatINAD and you can bet that I’ll be there. Probably…
If you’re an INAD family that has a blog, a Facebook page, a Twitter page, or some other social media account, we want to here from you! Reach out to us on Facebook (facebook.com/inadcure.org), Twitter (@inadcure) or Instagram (@inadcure) or by email at email@example.com and we will be sure to share and follow your page!