Co-Written By Amy Nora

Social Media…..We always hear about the negatives viewpoints and aspects of each platform. Like the fact that social media is full of highlight reels rather than what’s actually real. We only get to see what those influencer types choose to show us, which is usually only the highlights.  Or the fact that the internet is full of what we will call “keyboard warriors,” who spew all kinds of nasty hatred into the comment section of any social media platform. They say things that they would NEVER say to someone’s face all because they can hide behind their screens or keyboards without any real consequences. While those are well known facts about social media, what isn’t well known, or often spoken about, is the fact that social media is a HUGE blessing to those in the chronic illness community. I’ll wait while you pick your jaw up off the floor. Did I really just say that social media is a blessing????  

Now that you’ve had a moment to take in what I just said, I  will explain. One of the biggest issues that faces those in the chronic illness community is social isolation.  Once you get sick and get to the point that normal social interactions are no longer the norm where do you turn? What do you do when you can no longer get out and about and do the “normal” things like dinners out or meeting friends for a drink?  Some people joke that this would be their dream; however, if you are no longer able to do this life becomes very different. Most people these days turn to social media. They go in search of a person or group that might understand what they are going through. They go in search of a place where they won’t be judged for their lack of energy. Or places where they can find people who have a condition similar to theirs who they can talk to freely without having to worry that the person on the other end is making unfair assumptions about them. In the past those things were hard to find. But nowadays those things can be found on social media. Yes, I know that sounds crazy but it’s true. 

Facebook alone is made up of hundreds-of-thousands of different groups for different people groups.. You can find groups for just about anything ranging from a group full of people who love Yorkies, or a particular sports team, to a group full of people who have Lupus. But why would one want to be a part of group other sick people? That is simple, being part of a group with like-minded people is comforting. It is nice to know that there are other people who are dealing with the things you are dealing with. So much of the time once you develop a chronic issue the friends or family that you once went to with issues either don’t understand or don’t try to understand. It is hard for many to understand why when we say we are TIRED we can’t just take a nap and feel better. It is  hard for “normal” people to understand why we don’t have the same level of energy they do. Why we can’t go out for drinks and go dancing afterward without paying for it the next few days. While those in these groups of like-minded people do because they too are living it. It is nice to know you aren’t the only one awake at 3AM with insomnia. There is normally a whole crowd wide awake, and that community creates both camaraderie and a safe space for those with a chronic illness.  

Like I noted before, social isolation is a BIG problem for people in these chronic illness communities. Not only do people crave the understanding provided by these groups they also crave social interaction. That may sounds crazy to some, but it’s true. When many of the people you once went to for a good chat or just to shoot the breeze with are no longer there where do you turn? Where do you turn when you just need to vent about another bad doctors appt, or the lab report that just came back and isn’t good?  Many turn to social media. It’s nice to be able to chat with someone about anything and everything or nothing at all. it’s nice to have someone in your life who just gets your issues, and won’t care if you are still in your jammies at 4pm. Once you cancel plans with someone for the three-hundred and fifty ninth time (probably not that many times, but you get my drift) they stop asking. Most just don’t understand why you are cancelling and assume you are either being flaky or that you just don’t want to do whatever it is your plans were for. When in reality we wanted to do nothing more but our bodies wouldn’t let us. That is where these friends we make in these social media groups come in.  They don’t care if we cancel, or if we don’t answer their text right away, they get it because they are living the same life. We don’t have to explain why because they get it all to well. 

It’s weird to admit, but many of my closest friends are people whom I’ve never met in person. And I am completely okay with that. These ladies live the same life I do and totally get what I am going through even if they haven’t gone through the exact same thing. That being said, all the people you meet in these groups are not good people. Just like anywhere else, there are going to be some bad eggs. There are going to be rude and hateful people, or people who don’t get it. But for many it’s worth the possibility that you might find a bad egg. Joining these groups or communities on social media may be the only way some of these people interact with someone else all day. These communities become some peoples families. Which I know will sound crazy to some. But when you are homebound because of an illness the possibility of keep current or making new friends is slim to none. It’s hard to keep old friends when you can no longer get out of the house. These groups and communities provide so much. They provide support to someone who has been newly diagnosed with a condition that they have never heard of and don’t know anyone who has. They become the place where one can go and get things off their chest, or discuss things that no one in their life would understand. These groups become a place where they can ask questions about an issue that they are scared to mention to their friends or family because they can’t bear to scare them one more time. To some these groups are all they’ve got. So while it may sounds crazy that social media can actually be beneficial; it’s true. Believe it or not, social media can be the best part of someone’s day.

With Love

Amber & Amy