How I announced my invisible illness to my peeps on social media
So, here's a question: Have you told your virtual world about your illness?
I get it that you may not want your invisible BFF published because your co-workers or boss will see it; or you don't want people to judge you because someone they know has it so much "worse"--bleh, yuck, get those qualifiers outta here!
Well, here's where I'm at, and I'm sure many of you agree: Owning your dis-ease is super powerful. It's like a "shut up disease, I'm talking" sorta power. (My Invisible BFF, as I lovingly refer to it, can be pretty mouthy.)
Sidenote: You definitely don't have to announce it, or tell it to anyone if you don't want to...everyone is different, and that can be just as powerful. Like anything, just do you boo.
To answer my own question, I did. Twice.
The first time was in a private blog post that I texted the link to my friends. This is verbatim:
"Hey...sorry to tell you like this, but...www.posthope.idk..." (my website link was different but you get it.)
I got a few "is this spam?" and "holy shit I had no idea!" but, surprisingly nothing from some people. Like not that many replies. Which I thought was weird, but it's almost like you have to announce it on Facebook for people to know it's real. Or they're busy and never looked at your link in the first place because it was such a weird & ominous text, probably that. In my defense though I was a little too pre-occupied to follow-up. So chalking that up to timing.
The second time I announced my personal health news (not all, but some of it) was around 5 months later in a Facebook post I'd been crafting in my head for weeks. It was funny, informative, and to the point (key characteristics in any social media post, right?). Unsurprisingly, I got a pretty amazing reaction. Honestly, I still read those comments when I'm feeling shitty sometimes, they were that good.
In case you're wondering, I started my private blog post with "ok, here's the situation, my parents went away on a weeks vacation..." and had a link to the scene from Parks N Rec where Leslie Knope proudly raps the entire song, and then Ron calmly tells her someone is on fire, perfectly summing up my health crisis, ha. Perhaps not coincidentally (as you can see below), I started my Facebook post with the lyrics to another famous 90's rap lyric "now this is the story all about how my life got flipped, turned upside down, and I'd like to take a minute, just sit right there, I'll tell you what, I got a brain disease and they say it's rare". Talk about ripping off a bandaid! How else can you say it though? Probably so many ways...
Anyway, that's how I did it. And I was probably more calculating than the average human about it, but this is a big deal. It was brewing for 5 months after my diagnosis because I wanted to make sure it was a "real thing". What a silly idea, I realize now...though technically I suppose it is all in my head. Hey-o!
So, to summarize:
- You are putting yourself out there in a very real way, that actually is really hard to do on social media!
- You are owning that you have this thing, but you are not this thing.
- You are giving others a chance to know and support you, and offer kind words, prayers/thoughts/energy. That's a pretty amazing gift to give yourself. You've been through a lot!
- As I mentioned at the beginning, you have every right to not tell anyone.
However, based on personal preference: it's better out than in.
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PPs: Need support & upliftment from other fun invisible & chronic illness/disability peeps who get it? join our closed invisible/chronic illness FB group here