A few months ago I decided to delete Facebook off of my phone. In the days leading up to this decision, both my then-therapist and one of my parents had asked about the frequency of my social media usage and its effect on my emotions and mental energy. I have also been aware for a while that scrolling through Facebook often affects my anxiety and chronic pain levels, so I wanted to experiment and see if my anxiety improved if I made it more difficult for myself to check Facebook. I had expected that I would still check it a few times a week via my computer, but I had a bunch of appointments the first week and then crashed hard the second, so I wasn’t feeling well enough to sit and look at my laptop. I ended up not checking Facebook at all for two weeks. I know many of us experiment with these cycles of taking breaks from social media and I had previously only heard positive things about them, but while there were some mental health and stress-management benefits, I was surprised by some of the thoughts and feelings came up for me.
Most of us are aware that social media can foster feelings of isolation, exclusion, and unhealthy social-status comparisons, but when you’re chronically ill, sometimes social media is your only lifeline to the world beyond your home. There are weeks (or even months) where I am so confined to my home, my family, and the two friends I see regularly, that the idea that I could meet or be connected to new people seems a bit ludicrous. Sometimes these barriers to connection extend to old friends or casual acquaintances who I’d like to be closer to. Because I don’t have rhythms (like work or school) that create opportunity for me to be around people, it’s easy for other people to forget to reach out or connect. When I post regularly on Facebook, the comments or likes I get in response are the closest I get to the kind of casual interactions I used to take for granted almost every day. Are facebook interactions usually meaningful and soul-sustaining? No. But since I routinely go days without speaking to anyone outside my family, a short conversation in the comments of a friend’s post or mine can make me feel a little more human.
Social media also allows me to identify, follow, and sometimes connect personally with other people who share my experiences of disability and/or chronic illness. When bloggers, instagrammers, and acquaintances who are also ill or disabled share their experiences online it can help me feel less alone in my experiences, and gives me language for feelings and thoughts that I haven’t articulated yet. Most of the chronically ill and disabled people I know learn a lot about their illnesses, ways to care for themselves, tricks for making life easier, treatment options, and disability rights through online conversations, forums, or blogs. In many ways the internet and social media have provided incredible resources and a sense of community that wouldn’t have been possible 20 or 30 years ago. I learn a lot from the other chronically ill people online, and I do find a sense of camaraderie and connection in knowing I am not alone in my struggles and feelings.
However, it’s difficult to determine whether these small points of connection actually make my life better, or just allow me to palliatively cope with my isolation, without actually building soul-sustaining community. In those weeks of not using Facebook it struck me that almost everyone I interact with on Facebook doesn’t interact with me at all when I don’t use it. People I consider friends because I keep up with their lives and we occasionally comment on each others’ posts aren’t friends who text or email or call. When I don’t interact on Facebook or initiate a Facebook message, these friendships are practically non-existent. I am wrestling with what this means. Maybe this means that I need to shift my expectations and accept comments and likes from old friends without hoping for deeper connections and emotional reciprocity. Maybe I need to accept that as nice as it can be to see pictures and read statuses about the lives of people I’ve known and loved over the years, Facebook friends aren’t friends the way that people who take time to show up are friends. Maybe I’ve been taking all of this too seriously for too long and my expectations for what can be sustained online have been too high, but it’s difficult to accept that when most days online or over-the-phone social interaction is the only non-familial interaction I’ll get.
While I obviously haven’t come to a well-defined conclusion about my relationship with social media, I think that, in general, discussions about internet use, and the ways it helps and/or hurts us, often fail to include the voices of disabled and housebound people whose other means of daily social interaction might be limited. Limitations to social connection are everywhere in our fast-paced, productivity-focused culture, but are particularly oppressive to sick and disabled people who often get left behind when we’re not able to “keep up” with our able-bodied peers. Maybe all of us, disabled or abled, would benefit from finding new ways to utilize social media that prioritize interpersonal connection and real relationships. Or, maybe my complicated relationship with social media is a symptom of the deeper systemic problem of ableism, which makes it culturally acceptable to disregard and ignore those who can’t perform certain cultural expectations, resulting in a lack of opportunities for inclusive community between disabled folks and abled folks. Either way, I encourage you to not only think about how you use social media (goodness knows there are enough thinkpieces on that, you don’t need another one from me!), but more specifically, to consider how the online and offline communities you are a part of are working to include people with disabilities and chronic illnesses.