Embarrassing Confession: On a Bad Health Day, Facebook Has the Power to Make Me Cry


“I’m so grateful that the Universe has given me [insert amazing career/creative opportunity] and wonderful friends who have donated [insert enormous sum of money] to my Kickstarter so that I can follow my dreams…” the first post on my news feed might say.

It occurs to me to wonder why the Universe isn’t doing things like this for me. And why the Universe decided to give me multiple chronic health conditions instead. Is this my fault? Is it because I haven’t read “The Secret” and am therefore not manifesting properly?

Next up is a picture of a big group of people I know, seemingly having a really lovely time at some social event. I haven’t had contact with any of these people for months because I haven’t been well enough to socialize and they’ve all been… well, busy having great lives, I guess.

I haven’t seen or spoken to anyone today, and have barely done so all week. It took me until late afternoon to get dressed and brush my teeth (massive triumph), then I managed to stagger outside for a few minutes and then it was back to bed. I’m feeling lonely and scared and excluded, and seeing this picture has poked at that. I wonder if the people in the picture noticed my absence  — but why would they? I am absent from social events much more often than I am present. They have no idea of the enormous significance to me of the rare times I do get out. Those guys are practically my best mates, in my lonely, silly little head.

Then there’s a series of articles about the world falling apart in one way or another, which I can do very little about because I can’t even get out of bed. A piece about some more awful things the government is planning to do to people with disabilities, which cranks up my omnipresent fear about my ability to survive and sense of being a drain on society a few notches.

At this point I must have become weirdly addicted to the jolts of anxiety and self-loathing, because I keep on reading. For hours. By the end of it, my head and eyes are throbbing, my nervous system is so overstimulated I can’t sleep, and yeah, I’m crying. I did it again. I opened Facebook on a Bad Health Day. I have no one to blame but myself.

There are a few things going on when I subject myself to this process. One of them of course is simple jealousy. Another is, I believe, a legitimate sense of grief and anger about the social exclusion that comes from being invisibly disabled. But what I want to write about now is something else  — something I’m ashamed of but I’ve finally had to face, thanks to the cruel teacher that is Facebook.

I really, really want to win at life.

And it’s not happening. Not on society’s terms, not on my own terms. I’ve been fighting for a long time to win, and I’m failing at it. And I really, really don’t like that.

I’m not married and I don’t have any children. I don’t own my own home or a car (I can’t even drive). I don’t have a decent career, a face like a film star, money, power or… well, a great deal to write home about at all, really. Those are the things society tells me I should have by now if I want to be able to say I’m doing well.

But I want other things, things that on my terms would mean Winning At Life. Creative achievement. Queer community. Good hair and shoes. Everyone has their own list. And believe me, I really want to win this fight. Having rejected mainstream ideas about what I should want in life, I have to prove that another kind of success is possible. Having been chronically ill my whole adult life, and having been erased and blamed for it, I have to prove wrong the people who said I was just lazy, a liar.

In short, I have to have my happy ending. For life to just be tough and painful and for it not to get any better (or get worse) and then you just die… Well. I’m not down with that. No, thank you.

And is anyone OK with that concept of life, really? Or am I right in my suspicion that many people are fighting for their own happy endings, fighting to win at life, and these days reinforcing their sense of Winning At Life by performing it on social media?

Human beings in general are status obsessed. And when you open Facebook and you see one post after another about people’s amazing lives, one of the things you’re seeing is status display  — because status by definition doesn’t exist unless others see it. And there’s nothing wrong with that.

But when you’re chronically ill, trapped in bed alone and frightened, without any pictures of yourself looking hot on a night out to post, it can really, really hurt. You can get so trapped in watching others perform success, that you can get overwhelmed by your sense of lack.

There’s a way out

Because I refuse to be a grown adult who cries at Facebook, I’ve found some ways of reducing social media-induced self-loathing. I limit how much time I spend on social media; I’ve reduced my friends list from 500 to 150 (leaving only people I interact with online or in real life regularly), and I also “unfollow” people who share nothing but Winning At Life posts. I’ve banned laptops and smartphones from my bedroom. If I am so ill I am in bed, then I am too vulnerable to be on social media.

When I am able to handle Facebook, I try to be honest about the struggles I’m having, partly to avoid the game of performing success, and partly because other people who are Not Winning might appreciate knowing they’re not alone.

While status anxiety is human nature and reducing FB time is not going to cure it, I do think social media is particularly emotionally corrosive for those who’re marginalized. When I spend a lot of time on the internets, particularly when my own life/body/mind are not happy places to be, I can easily become so disconnected from physical reality that I forget that there are tangible things I can do to take care of and comfort myself. Once I’ve turned FB off, here are some things I’ve found that have helped:

1. Face-to-face community. Humans need to spend time in groups where they feel safe and accepted. Eye contact and smiling faces (it’s scientifically proven) affect us on a subconscious level, telling us we’re part of the group, and therefore going to survive. Even if I can only be part of a group once a month, it makes a difference that lasts.

2. Gratitude lists (for my eyes only). I did these daily during the darkest period of my myalgic encephalomyelitis, when I was mainly bedridden, had no idea what was wrong with me, and was terrified and alone. The only one of those things the gratitude practice changed was the terror, but that was enough to enable me to keep going. The list featured things like, “I have a comfortable bed to be ill in.” “The cat loves me (kind of).” But please note: once you start telling the world about all your gratitude for the big and impressive things you’re just performing, and that’s not what it’s about.

3. Service. I’m not talking about anything big, because spoons. Sending a text to a struggling friend or sharing my experiences of chronic ill health because it might help someone else may be all I can manage. But if I do that with intent, it changes the story (not “we’re all fighting alone to win at life,” but, “we’re all struggling but it’s OK because we’re in it together”).

4. Gentle, mindful physical activity. I get trapped in my head and dissociated from body and surroundings easily. Then the voices that tell me I’m failing are all-powerful. Slow walking, qigong (which can be done sitting down), playing a drum, stroking a pet (or partner), crafting all help.

I’d love to hear what works for other people, since not all of the above will be accessible to everyone.

And finally, when it comes to Not Winning At Life, there are really only a few options I have here. If I can’t succeed on society’s terms, or my own*, I can either live in misery or find some way of moving beyond the game altogether. And shazam  — the human search for A Meaning Of Life Other Than Facebook begins.

*Apart from the “good hair and shoes” bit, at which I am excelling.

A longer version of this post was originally published on Medium.


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