Social Media for Spoonies: A Double-Edged Sword


Ah, social media. My generation’s bastard child, a double-edged sword, a false reality. It gives and it takes without regard for the emotional capacity, the present day’s to-do list, the general life plan, etc. of its consumer. At the end of the day, Instagram, Twitter, Facebook – they are businesses. They are the products of a waining cultural attention span (and yeah, I recognize this is far from an original thought – which, in itself, seems to be becoming increasingly more difficult to have). They are focused on revenue as much as they are on flooding the product marketplace. But they know content and they know it good.

Social media sometimes feels like endlessly scrolling through pixelated broadcasts of someone else’s brief joy. It is quick, easy and simple to consume. A perfect mismatch of energies. My confusion is existential, and the subject’s enjoyment is fleeting. It satiates the eyes without soaking the soul and I find I am still dry each time I close my screen.“There’s nothing new under the sun” is perhaps no more evident in our current climate than it is on social media.

woman smiling and giving a thumbs down
Filters give the realness a shade of levity

Social media is so often easy-to-consume, relatable and even goes so far as to unearth the common bits of us only previously thought to be unique. It is nearly all appropriation, a giant red pen over originality. But, most of the time, we don’t care; it is just such a relief to not be alone. I have met more young people with chronic illness, more transplant recipients, more women age 24 who had their heart (or, in some cases, also their lungs) transplanted solely because of social media. I remember begging my clinic-assigned social worker to pair me with someone who understood. I just needed someone else to get it. Weeks went by before I was matched. Requests for more – more young women with heart transplants (no), more young people who have had transplants (lol, nope), OK literally anyone who is under 75 and has had an organ replaced for Pete’s sake (nice try) – went largely unattended.

Until one day when I discovered the true wonders of the hashtag. Thus began the search for everything. Every corner of medicine or illness or healing was suddenly between thumb and index. Too much to take in in one sitting (and, sometimes, admittedly too much to handle altogether). All fueled by the devil’s supplication: the algorithm. Talk about a double-edged sword. The more I searched, the more I found. The more I searched, the more my Instagram Explore page overflowed with videos of stitching lacerated ankles, boomerangs of G/J tube infections and pictures of kids with cancer. But I wouldn’t trade it.

woman giving thumbs up during an angiogram
Instagram Stories keep angiograms bearable

Here I have found the pinnacles of humanity side-by-side with the nadirs of life. There is great camaraderie in the chronic illness community. Young adults who would otherwise be labeled “housebound,” “too ill to participate” or just “sick” find agency, validation and true empathy online. Furthermore, the eat-without-chewing nature of the fleeting images and six-second videos are just palatable enough that those outside the medical bubble have found a way to see inside for, quite often, the very first time.

And yet, though another spoonie’s comments on my Insta story serve to connect and corroborate my experience, I still scroll through, never satisfied. Sometimes I stop searching at the end of the day, not because I grow less interested, but because my eyes are so arid from not blinking that it hurts to close them. It hurts to know that, no matter how many people I find out there, no one will truly know what it was like just for me. It hurts to feel isolated in your own community. And then it hurts to watch someone struggle to overcome their pain. It aches to watch someone dying through their profile. It wrenches your heart out to see someone disappear altogether.

I think back to who I was before I became a member of this club no one wishes to join. I thought I would be someone different. I thought I would spend my days as if they were my last. I thought I would be doing something that mattered. I don’t desire to be a chronic illness warrior and I certainly don’t want to be a martyr. I have mixed feelings about being inspiration porn. Though, at the end of the day, it doesn’t really matter who I end up being, as long as I know who that is. I thought I would no longer sweat the small stuff. I scoffed at the idea that I would still be too afraid to approach anyone remotely out of my league. I thought I would be more assertive, less accommodating and so, so grateful. I thought a lot of things. But aye, there’s the rub, because I still do. I still stew and overthink, snowball into what I did wrong to let this less-than-ideal outcome materialize. I still agonize over the thought of confrontation, particularly when it engages those I care about.

group of patient advocates
Meeting some social media heroes and patient advocates in real life!

Then I think of the woman whose life was cruelly swept away a week before reaching a year with her new lungs. I remember the girl who is entirely dependent on IV fluids and TPN so she does not starve. And then deep, down beneath my stomach, in the core of me, I ache for the little boy who was lost to DIPG. And for them, if not for me: I affirm that I am, now, someone different. I cared before, but not like this. I fought before, but not like this. I was hurt, but never so deeply. I was betrayed, but never so consequentially. I keep asking, “When? When will I love something (someone?) like I have never loved before?”

I think what I am discovering is that this “second chance” everyone talks about in no way automatically ascribes new meaning to your life. In fact, I could argue that it doesn’t even provide perspective. It provides weight. It provides duration. It both lightens and heavies the load; it both shortens and lengthens time. The meaning or perspective you then develop is a product of your own interpretation.

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