Special Needs, Social Media, and TMI (Too Much Information)

  • By Matthew Chambers Springible Contributor
  • Reading Time About 5 minutes
  • PostedMarch 8, 2019
  • Category

Social media can be a great gift. There are dozens of platforms that allow people like you and me to have a voice, and the freedom to use that voice any way we choose. It’s a wild frontier of people all over the world expressing themselves, textually, visually, verbally, and musically. We can share our highs and lows, our experiences, our struggles, our opinions, our skills, our questions, and our very personal daily lives (to the extent we are comfortable). We use social media to reconnect with old friends, find new friends, and yes, even lose friends sometimes.

It’s also a place where humanity will go places or be coerced into places (fake news, anyone?) which trend from the mildly annoying, ignorant, inappropriate, disturbing, and all the way to completely toxic.

We’ve all seen those social posts (maybe you’ve been the author of some). The ones that leave you feeling a little bit icky. The ones that make you cringe. The ones that infuriate you. The ones where your only response is, “WTF were they thinking?!” And, let’s not even attempt to make sense of some of the comment-section cesspools…I mean, who talks like that or says those things in real life?

When the TMI becomes TM, most, if not all of us, are well acquainted with the mute, unfollow, unfriend, and block buttons. And, nearly every day I see a post about how someone has deleted an app off their phone, or restricted social media use in order to protect themselves from anxiety, disappointment, frustration, or getting sucked into another pointless debate. After all, too much scrolling can swing us virulently back and forth between feeling like “everyone in the world is awful” and “everyone in the world gets to do amazing stuff except for me. Do they all just have unlimited money?!”

For someone like me, social media has been a great way to share the journey of our son, Jude. He was diagnosed with the rare genetic disorder, Tuberous Sclerosis Complex, in 2007, and social media is a place where I can talk about his life and our lives together.

But, with every post, there’s always the risk of crossing over into the territory of oversharing or TMI, especially since Jude’s cognitive development won’t ever be such that he can edit my words, tell me not to post a certain photo, or ask me to delete something I’ve shared.

For other parents and caregivers like me, and self-advocates living with diverse and infinite challenges every day, we desperately want the world to know what REAL life is REALLY like for us. We want to know people see us and hear us. It’s a place for us to share our stories, and even process life in the moment. Sometimes, that can come across as raw, deeply intimate, and even a bit uncomfortable. God forbid anything we share should ever go viral.

Reality is, social media might be the only platform some of us have to be heard.

So, I’ve come up with five guidelines for posters AND readers that I hope will be helpful for you.

For Posters:

  • You have every right to be honest, be yourself, and be heard
    • But, not everyone will always listen, believe you, or agree. Do it anyway. If you need to share, go right ahead. Let the world know what’s happening. Even if you don’t get the response you are hoping for, expressing yourself is healthy and relief.
  • No one can disqualify your feelings or personal experience
    • They might try, but your life is your life. Live it, show it, and share it as honestly as you can.
  • Never assume your readers automatically understand your perspective or reality
    • Chances are, you’ve been on your journey for quite a while, but everyone else is on a learning curve. This is a great opportunity to bring them along, even if you have to OVER-explain, just to make sure your message is clear.
  • Drafts are your friend
    • Not everything needs to be public. Having doubts about a particular post, or what/how to say it? Saving a draft and coming back later is always a good idea. Then, you can either post an edited version, or leave it in drafts forever. (Sometimes, you might be the only one who needs to see it.)
  • KEY PRINCIPLE: Post about others as you would have others post about you
    • Your deepest desire is for people to resonate with you and your life. You can either invite them in or chase them away with your words. So, always post with great care, ESPECIALLY if your content / photos share an intimate part of someone else’s life (i.e., your children, spouse, significant other, etc.)

For Readers/Commenters:

  • Before you react, cut some slack
    • People going through difficult times tend to post from a very raw place. Their feelings and experiences are just as valid as yours, so approach carefully.
  • Clarify and Identify
    • Social media arguments are almost always packed with people just spewing prepared talking points back and forth. After all, we’re typically well-versed in our perspectives (or the perspectives we’ve gleaned from others), and don’t invest nearly enough in really hearing the other person out before we respond. Listen and understand first…always.
  • Remember standards for sharing are subjective
    • Yours will be different than theirs. Maybe one day, and with developing trust and relationship between both of you, they might align more closely.
  • Privately correct, publicly praise
    • Do you know the person you’re responding to? Maybe drop them a private note or direct message first. Want to say something encouraging? Always do it publicly.
  • KEY PRINCIPLE: Being kind > being right
    • Simply stated. Winning isn’t really winning if you’ve destroyed a relationship worth keeping.

I hope these rules of thumb are helpful for each of us (I’m absolutely including myself in this…I’m always learning too) as we seek to share our journeys.

Social media is a wide open and largely ambiguous…it’s how we use it that determines the good (or bad) that can come from it. We’ll come away either feeling more lonely and isolated, or find a community willing to listen and engage. May we strive for the latter, and support those around us struggling with the former.