Ah, yes, social media…the most defining and polarizing invention of my generation. For better or worse, social media is a part of our daily (if not hourly) lives. Instagram, my personal favorite social media tool, is a home to cat memes, gym-spiration, and snapshots into the lives of loved ones.
Let’s take a look at a few of the pros and cons of social media from a Spoonie’s perspective, including the answer to your burning question…are Spoonies lying on Instagram?
1. You can connect with “your people”
My life was forever changed the day I discovered the online Spoonie community. By searching specific hashtags on Instagram, I was able to connect with hundreds of people my age who also lived with severe, invisible chronic illnesses. I went from being the only person I knew who had such strange health problems at such a young age, to discovering several hundred profiles owned by people just like me.
Loneliness and isolation are the worst parts of being chronically ill. So, being able to digitally meet and interact with other people like me, even if they lived on the other side of the country, was amazing. It is one thing to hang out with healthy friends and family members, but it is an entirely different experience to communicate with other people your age who are stuck on the same sinking ship that you’re on. You don’t have to pretend to feel decent or feel awkward about not having a normal job, because they they’re in the same situation!
I remember falling down a “Spoonie rabbit hole” on social media for the first time and loudly exclaiming, “I did it! I’ve found my people!”
Like any subculture, Spoonies have their own lingo, social etiquette, and concerns that are different from those of the general public. I love and appreciate my healthy friends and relatives, but there’s nothing quite like finding “your tribe.”
2. Other humans are the best resource
Shifting from an emotional note to a practical one, connecting with other sick people via social media opened up doors that I didn’t even know existed before. It goes like this: you post one time in a chronic illness Facebook group and you get a hundred responses from people who know what works and what doesn’t in terms of treatments, doctors, and medications.
As a plus, the Spoonie community is a rather small world, especially in specific areas like Chronic Lyme. So before you know it, somebody in your group chat is telling you about their second-cousin’s-brother-in-law who is dealing with the same thing, and you are instantly connected with that random person whom you would never cross paths with otherwise. You can compare stories, notes, and recommendations. I have found that talking to an actual patient who has been to “that clinic” or tried “that treatment” can give me a more accurate summary than reading a thousand pages on the internet would.
There is such a difference between reading about a rare disease on WebMD and talking to a real, live human who lives with it every day. A single person can be a well of knowledge, you just gotta find the right person and tap into that well.
The #1 BIG Con: Sometimes you feel like a fraud…
Obviously I can’t speak for every person who has a chronic or invisible illness, but I have heard enough chatter in the far corners of the internet to safely assume that the majority of Spoonies feel like they have to put on a mask every time they post on social media.
Spoonies understand that there is a very delicate balance between coming across as two-faced and coming across as an sympathy-seeking whiner.
This struggle to represent yourself accurately but not too accurately, might be difficult for healthy people to understand, because most healthy people just post whatever they feel like posting.
Obviously, we all post only the “highlights” of our lives on Instagram and Facebook. This is a pretty universal concept. We post a cute bikini pic from our spring break trip at the beach, but we don’t post a picture of us hungover and puking from all those Margaritas. We post a picture of our adorable new puppy, but we don’t post a picture of all the new couch cushions that puppy just destroyed.
But what if every day of your life was just a jumble of doctor’s appointments, needles, pills, worrying, medical bills, and more worrying? You want to feel present on social media and connect with others, but what do you post? Your healthy friends don’t want to see another picture of you sitting around doing nothing, so you cake on a bunch of makeup, find some good nature lighting and snap a decent looking selfie.
At this point you’re really feelin’ yourself but you’ve still got those bags under your eyes, so you use a little Facetune here and you throw on a flattering filter there and *BAM* you look like a normal person. Satisfied with your handiwork, you post your photo and watch the likes roll in.
“Wow, you’re looking so great these days!” an old friend from high school comments.
“Gorgeous!” another friend chimes in.
You are flattered by the praise of friends and strangers, because who doesn’t like a compliment? But all those warm feelings are almost buried under the guilt that rises up in your throat. You think to yourself…am I a liar? Am I lying to my friends by posting this one, momentary snap-shot of feigned “normalcy” when I’m actually pretty miserable 99% of the time? Am I lying to myself? Why do I want people to think I’m happy and healthy when I’m not?
<<<If I take a picture where I look like this…
…But inside I feel like this>>>
Am I being honest with myself and with the world?
What if I post a picture where I look like your average, healthy 20-something out for a quick walk…
…But I really spent most of my day laying in bed and that walk wore me out for the next two days?
Spoonies feel as though we must continually choose between denying our suffering (by pretending to be fine) and being perceived as inauthentic (by those who don’t believe we’re really sick in the first place). Do we have to “prove that we’re sick” by only posting depressing medical updates? What if I just want to be seen as a normal girl? This is a perpetual struggle for those of us who have been gifted with “invisible illnesses.”
So, what can Spoonies do to help themselves?
- Have at least one outlet that is a designated “Spoonie only” social media account or support group. Healthy people can’t and don’t need to understand our every ache, pain, and worry. For example, I have a Twitter account that is reserved solely for chronic-illness-related talk that I use solely to connect with other sickies (shameless plug here, my Twitter handle is @ThatSilverSpoon…hit me up!). This allows me to rant and rave about healthcare, Lyme disease, disability, whatever, without overwhelming my healthy friends with emotional vomit.
- Strike a balance between “regular people” posts and “Spoonie/health related” posts on your general social media accounts. I have found that a 50% split between sick-people-content and healthy-people-content is a good mix, so that I am still being authentic (not denying that I’m sick) but I also have some content that my friends and family can relate to.
What can the loved ones of Spoonies do to help?
- Please, please, please, do not judge our lives by what you see on social media. As I have explained, a lot of it is fabricated to make us look a lot healthier and more functional than we actually are. We are not trying to deceive to you, we are just trying to feel as normal as we can in a world where we feel very abnormal. Just because you saw a picture of us at the beach yesterday, that does not meat we feel good enough to leave the house today!
There you have it. The truth has been revealed! We’re not liars, we’re just stuck between a rock and a hard place, trying to be authentic in a world that would rather see smiles and rainbows all the time.
As always, thank you for reading. And as you go on your merry way, consider how everything you see on social media might have a little more to it than meets the eye…
Em the Silver Spoonie