When Social Media Lets Us Down: A Search for Community (in all the wrong places)

By: Robyn M. Ollodort, Longmore Institute grad student assistant

In an age of technology, sometimes the community we seek is best found in real life.

Chances are good that if you're reading this post, you're online hoping to connect with community. Type the name of one of your identities into a search bar, and you expect to find results that call to you, that draw you in. But what happens when they don’t? Two bright silicone bracelets, both half light blue half purple, for arthritis causes. The bracelet on the right/top reads "Cure Rheumatoid Arthritis" in white letters; the bottom/left has the word arthritis, with no color fill.I am not an ambassador of the chronic illness brand. I can't run a race to find a cure. I don't own any Livestrong-style rubber band bracelets. I don't participate in hashtagged challenges, ice bucket or otherwise, on social media.

But I am #sick.

I was diagnosed with Ankylosing Spondylitis in the summer of 2012, just days before my 21st birthday. AS is a flaring condition that generally involves the spine, resulting in eventual fusion of the vertebral column or effected joints. But, because I had juvenile AS that went un- and misdiagnosed for at least ten years prior, the effected joints in my body were the sacroiliac and hip. I have experienced the pain and joint discomfort I now know to call 'flares' for as long as I can remember; however, AS in my body does not just mean flares of chronic pain and inflammation. I also experience chronic fatigue as a result of AS, which may be the even more debilitating symptom. I have been tired all the time, for as long as I can remember, and no amount of sleep or stimulants has changed that this far. I have never been an athlete. I was not robbed of my ability to climb mountains. And no amount of healthy eating or exercise will stop me from needing to take a nap OR having a flare. Because, believe me, I have tried.

The thing is, this is not the common experience of arthritis, and I know this, because as soon as I was diagnosed, as soon as I had a term to type into search bars, I wanted to find other people with this disease. Other people who gave themselves shots. Other people with chronic pain and fatigue.

Taking to the internet, I found a Facebook support group, with people sharing their stories of spinal column fusion, childbirth and heredity concerns (AS has a genetic component), and an overabundance of #spoonie and #spondy baby talk photoshopped over generic images of awareness ribbons and nature scenes. This is just not who I am.

A white spoon on a white background, with text inside the spoon reading: "don't waste your spoons". And that's what makes it so hard for me to navigate the social media communities of support set up for #chronicallyill people with #arthritis like myself. I was born in the 90’s and grew up with technology; shouldn’t I be able to find the community I’m looking for through it? Especially when it seems like everyone else in their early-to-mid-20’s is doing just fine, connecting over twitter and Facebook groups on all kinds of issues and experiences. Why was this so different?

I’ve written previously about how important I think representations are for identity. I wanted to see people, around me or otherwise, who also have to stab their abdomens with burning serums. I wanted to see people who sneered at running, and curl up on couches with bags of popcorn for Netflix marathons instead. Watching reality TV (a thing I do quite often, and am very passionate about), I was excited when Real Housewives of New York City’s Jill Zarin’s daughter, Aly, had some kind of undifferentiated spondyloarthropathy that no one really talked about, and I watched with anguish as the cast of Shah’s of Sunset doubted Golnessa “GG” Gharahedaghi’s struggle with rheumatoid arthritis and chemotherapy. But I wanted to know people in real life who deal with similar things as me.Screenshot of a woman, GG, in a beige hooded sweatshirt and gold jewelry, sitting in a transfusion chair in a doctor's office, raising her right arm and looking defensive, as though she were in the middle of a sentence. The screenshot also features promotional imagery for the Bravo network, and "#Shahs" in the top right corner. GG, looking defensive while receiving chemotherapy as treatment for her rheumatoid arthritis. Image found here. 

My body betrays me constantly, I can't trust it, and maybe that's not the best way to relate to others. It's not the best basis for connection, the disease that makes me feel trapped in my own body.

But also, what these groups seem to be bonding over (pregnancy stories and decades of anguish in the healthcare system, respectively) were not the things I was concerned about; they weren’t the same questions as the ones I was asking.

Beginning my second semester of my second year of graduate school, I received an email seeking paid interns for the Superfest: International Disability Film Festival. I write about representations in tv and film, so naturally I jumped at the opportunity. In pursuing an interview, I noticed that the ad specified that the participants had to be students with disabilities – the first time my having a disability qualified me to do something special, let alone a major career move! The difference I found between support groups/Facebook pages and my experience with Superfest is that watching the film submissions, we were discussing the deeper issues of the social constructs of disability: how we are seen in society, how we want to be seen, how to make our experiences funny, and political, and REAL. The people I met were like me: college students, with full lives and career plans, and also real, life-changing experiences that shape our views of the world. We take our bodies seriously, and use our experiences of them to inform our political perspectives. Plus, we got to spend three hours a week eating snacks and watching the best movies I’ve ever seen (links direct to curated list of trailers of my favorite Superfest films: Breakfast at Ina's, Neighbors of the Other Type, Underland pt. III, Terminal Device, Supersonic, Awake, respectively)

Now, don’t get me wrong – I’m still struggling to find community, especially in places that I thought it would come naturally; but the critical gaze is much more fun when shared with friends. Screenshot taken from SFSU's "A Year To Remember 2016" video, featuring Robyn and Alex, seated at a table with snack packages and a box of tissues, and Robyn's laptop, with a sticker that reads, "OK, but first coffee"; staged at the Longmore Institute. Author on the left. Image courtesy of SFSU Academic Technology, via Youtube.