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The Facebook Comment That Encouraged Me to Keep Hashtagging My Illnesses

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I had a day filled with personal family drama, I’ll spare you the details, but it ended with my friend who has been there as long as I can remember, who had an almost-4 year-old daughter I hadn’t met yet, being there every step of the way and spending many afternoons and late into the evenings at my house just visiting.

She is a fellow warrior of the same chronic invisible illnesses, who is also fighting her own battles and has an outrageously cute daughter who is smart far beyond her years and doesn’t let the braces she has to wear that help her walk correctly after several surgeries stand in her way (in fact, she comically tore them off and complained of itching with very emphatic little one words, but not before her mom snagged a picture of me and my boyfriend helping her tie the back of her super colorful rain boots her mom had fitted to specially cover and fit around the braces, with ribbons and all). It was nice to talk freely and not have to worry I was being judged, and know that they got what I was talking about.

I posted the photo to Instagram a few short hours later, laughing at the silly gigantic yoga bun my friend had given me on her daughter’s insistence that I match her own baby bun atop her head, and realizing that despite my crappy day I still had a wonderful little niche to turn to for a little while.

My caption was as follows, hashtags and all (yes, I am a nerd. I don’t apologize):

Well, today was a day. But I made it through.
It was a day I was reminded of who I haven’t lost in the face of all I have.
And all the ones I have gained along the way.
“A wise man once told me family don’t end in blood, but it doesn’t start there either. Family cares about you, not what you can do for them. Family’s there through the good, bad, all of it. They got your back even when it hurts. That’s family.” – Eric Kripke
And I seem to have found me some of these.
#spnfamily #spn #family #friends #filter #filterneeded #forreasons #likeawesomeness #mylightingsucks (*camera emoji* by @myfriendsusername)
#chronicillness #chronicbadass #fibromyalgia #fibrowarrior #pots #posturalorthostatictachycardia #posturalorthostatictachycardiasyndrome #pcos #polycysticovariansyndrome #hypothyroidism #ist #inappropriatesinustachycardia #invisibleillness #invisiblechronicillness #ifight #iwin #bebrave #dysautonomia #autonomicnervoussystem #rosecea #gastroparesis

On Facebook a few hours later, I got a comment on the photo from an old college friend.

“Do you have all of those?”

I paused. Was she asking if I truly had all the things I was thankful for? Then I realized. My hashtags. Things I had been adding to posts for weeks. (Or longer. I can’t remember.) Things I dealt with on a daily basis, and didn’t think twice about adding their names in a hashtag, thinking if someone happened to see my post while scrolling through that hashtag, maybe it would help them, even if it’s only one person. These are my daily life, I didn’t think twice, until I had to.

I replied.

“Yes. Among a handful of others. And still diagnosing.”

Not long after, I got a reply.

“Holy cow! I am SO sorry!”

To which I said….

“*shrug emoji* It is what it is. But thank you! One day at a time. I’m just grateful to finally know what’s been going on for years.”

And she hearted my response, and that was that.

Now I add my hashtags in a comment on my post, but I still add them. They are a part of me. I don’t hashtag about bowel issues for, pardon my French but I must make this pun, shits and giggles, I don’t mention my embarrassing face flushing from rosacea, I don’t talk about my ovaries that don’t know what exactly to do, my autonomic nervous system that is just as confused, or my joints that swell randomly and hyperextend, causing bruises I can’t remember getting.

Because who wants to read that?

Who wants to write that?

Who wants to sit there, giggling like a school kid as they type the names of things I still can’t even spell even though I have them, behind a pound sign just because?

I write them because I have them, and because of that, I know I am not alone, as I look through the sea of others like me, connecting through the # sign, bringing lost and broken souls just a little bit closer to being mended.

Tell your story, no matter how many pound signs you have to use and spellings you have to look up. Do it. Let us know you’re here. Stand up and be counted because this war will not be won alone. When we lose daily battles, we need to know we will win the war. It’s time to #soundoff #speakup and let them hear our #battlecry, because we ain’t going down without a fight. If anyone knows how to keep fighting, it’s us.

Getty photo by Adehoidar

Originally published: January 5, 2019
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