The Actual Doing Is A Separate Hobby

 I'm taking a stab at Instagram. We'll see. You can find me under Pinata of Pathology there. 

I'm thinking it'll be a bust. I didn't realize how toxic the Chronic Illness space had become. It's very trendy and you either fit the trend or there's no room for you. And everyone wants to be a rockstar...lots of you follow me, I'll follow no one. There's no community. It's people vying for attention.

When did everyone become so self centered? There's no Oprah of rare or chronic disease. No Oscar for best POTS fainting video. No Emmy for best Long Haul Get Ready with Me. 

Patients should be banding together and pushing medicine to change. Instead everyone wants to win gold at the Sick Olympics. Like one individual getting the gold accomplishes anything for anyone else.

Worse, I don't have POTS or Chronic Fatigue. My conditions aren't popular. No one's heard of most of my stuff. I'm not young. And while I am a mom of a kid with rare disease now, that's really new and not how I'm entering the rare disease community. I'm coming in on the wheels of my own rare disease. I'm not here to post pictures of my kid and use the word warrior five hundred times. I'm not a warrior. I'm fucking tired. 

But there are precious few adults with rare disease on social media. Wow. 

Where are the cynical swamp hags of chronic illness? 

TikTok is marginally better. There's a lot more back and forth between patients and medical providers but even then it's a lot of POTS and EDS and I'm a super odd duck who moos the word fuck instead of quacks.

So I guess I'll be poking at TT. We'll see.

Why the change? I decided I have things I want to say. Things I want heard. And I think I can provide some value. But we'll see. Like I said, I'm tired. I'm not really interested in chasing fame on this or having to do the insincere fawning it takes to network your way into traffic on social media.

It seemed like a good idea at the time...