When it comes to your personal struggles and battles with a chronic illness, when is it okay to share on social media?
I used to be very private with my battle with Crohn’s Disease. Pretty much the first 10 years I wasn’t very public about it. I was diagnosed pre-social media (remember those days?) and every time I was in the hospital my mom would have to make the many many phone calls (including an international call to my father – long story, we used to keep him in the loop). That’s what we had to do and we dealt with it.
Even as Facebook began to overtake our lives, I didn’t really post about my health. I’ve found old Facebook statuses that have vague comments about not feeling well here and there. Remember when Facebook made us talk in the third person?? At one point I had created lists among my Facebook friends and I used these lists to only update, close friends and family, when it came to my health. I loved this feature. I didn’t have to share personal information with every freaking person, just those I wanted to keep in the loop. (This feature might still exist).
Then in 2011 when I began blogging I discovered Twitter. On Twitter, I found hundreds of others like myself and I felt more comfortable talking about very personal health issues. Odd, isn’t it? That I felt more comfortable talking about it with strangers than I did with my own friends and family? I think it has a lot to do with how embarrassing Crohn’s Disease can be. Talking about pooping my pants with people I know is difficult, talking about it with strangers from around the world who could relate is so much easier.
After I opened the floodgates via twitter and blogging I couldn’t stop sharing and I learned to post about my issues on my own personal Facebook page. I probably annoyed some of my friends, especially when I began fundraising with Team Challenge. Sorry for annoying you with posts about my disease and how I’m running a half-marathon to try and find a cure. Most people were supportive, but I heard some comments through the grapevine.
According to certain people, there are things that should be kept private. Here’s the thing. We are all completely different. I can tell you that I gained nothing by keeping it all in, in fact, I probably only hurt myself in the long run. This disease makes you feel ashamed of yourself, and with shame comes the inability to open up. To the people who want to keep their struggles private, I am in no way trying to shame you. You do you. But to the people who THINK they know how we should handle our struggles (especially when they know nothing about it) I beg you to walk a mile in my shoes and then keep it to yourself. If you don’t like what I’m saying, you don’t have to listen. This isn’t forced upon you.
Don’t let anyone make you feel bad for sharing what you are going through. There are no set rules anywhere. Social media is still pretty new and is constantly changing. We get to decide how social media works for us, and that’s that.
I’ve been known to post ER selfies from time to time. While I may be in a sucky situation, at least I can use social media to keep people updated and show that I’m okay. I’ve even Snapchatted my way through a colonoscopy prep, which is a weird way of trying to entertain myself.
Trying to bring it back to my original point. When should you post about your battles and when should you not? I sometimes find myself holding back because I don’t want to worry family members who read my posts. Other times, I just can’t be bothered because then I will have to constantly update people on what’s going on. I have no set rules, I post what I want and when I feel like it. There are hospital stays that go without any mentions or ER selfies, and there are others where I’m live tweeting everything. I do as I please.
Over the last few years, I have found a balance that works for me among the different social media platforms. I don’t use them all the same way. This is the formula that I feel comfortable with and have developed over the past few years.
Personal Facebook – I typically don’t post anything regarding my health on a typical day, unless it’s a major update regarding hospitalization or surgery. I also will post anything related to fundraising because I want that $$$.
Facebook Page – I created a Facebook page for The Sick Adventures of a Semicolon Girl to have somewhere on Facebook just for my health-related posts. I invited my personal contacts and they can choose to follow for my updates. This is also a great space to promote my blog. This way you are only “annoying” those that choose to want to hear about your updates and not really nagging your personal contacts that aren’t interested.
Twitter – Twitter is all Crohn’s all day long. I also post personal opinions about shows, movies, pop culture, and politics. I’ve had some political comments take off (cough 600 retweets cough). Plus Twitter is a great platform to post multiple posts in a day. People on Twitter follow you because they like your posts, they want more of it. The more you post, the more followers you get. This is the platform for you if you have a lot to say about everything and anything. We all have that friend who posts a million times a day on Facebook and we roll our eyes. On Twitter, that kind of stuff is encouraged.
Instagram – Last year I made a big change to my Instagram. I made it private. Now, I thought about creating a personal one and keeping my Semicolongirl account public, but I thought that was a pain in the ass. I already have a work account I manage, I didn’t want to toggle between so many different accounts. I love pictures and in my personal life, I like to share things with my close friends and family. I decided to keep my Crohn’s posts on Twitter and my Facebook page and leave Instagram private. Sorry if I blocked you, it wasn’t personal. Although Instagram is such a great platform to connect with others, I opted to make my account private. I did receive more than one message from people asking why they were blocked. That’s the story.
Snapchat (username Semicolongirl) – I’m relatively new to the Snapchat game, but I’ve grown to love it. It’s a lot of fun, especially when I’m bored waiting at the doctors. It’s a great way to post multiple pictures from the hospital and other Crohn’s related pics. I roll my eyes at those who post multiple Instagram pics, but multiple Snapchat photos? Yes, please! I use this to post pictures of my cat and silly selfies, nothing groundbreaking. I don’t use it every day, so I may not be the best Snapchat user, but I do have fun with it from time to time.
Like I said before, you really have to find what works for you. You shouldn’t feel obligated to post, social media is supposed to be fun and supposed to connect you. You can use it as a tool to find a support group and more information about your illness like I have. You shouldn’t feel the need to hold back because you’re worried about annoying someone. Honestly, if someone doesn’t want to hear about your posts they can unfollow you. No harm was done. Don’t be offended if you find out someone has unfriended you or unfollowed you, more important things going on in your life than social media numbers.
Happy posting! Post what YOU want, when you want and forget about the rest. Your social media is about you and you get to decide what information you want to share, no one else gets to dictate that.