What does #NEISVoid mean?

tl;dr:

It’s a hashtag you can use to join asynchronous Twitter conversations about life with chronic illness, diagnosed or otherwise. If you ask a question or share a personal fundraiser on Twitter using the hashtag, we will almost certainly retweet it on @RTsFromTheVoid but it might take 1-5 days because we’re both sick and we need to read everything in the tag to decide what to retweet.

If you’d like to have more synchronous conversations with other sick folks while you’re looking for company during a flare or trying to find the right name for an annoying symptom, head over to the community-moderated #NEISVoid Discord (if this link is broken, the best way to let us know is, incidentally, to post about it on Twitter using #NEISVoid so that we can give you a working link & update this one).

When you respond to other tweets that include the hashtag, make sure to follow the void conversation guidelines that invite us to believe each other unequivocally, refrain from giving unsolicited advice, and to show up in solidarity across conflicting access needs.

Ok, now for the long version!

#NEISVoid is a hashtag that No End In Sight host Brianne Benness created in March 2020 to centralize conversations about life with chronic illness and the diagnostic process that were spilling over from this podcast onto Twitter. Here’s the original intro thread:

The idea was to make these kinds of conversations searchable for everyone (you can read all the top and most recent posts right here) and to make it easier for everyone to crowdsource answers from the community regardless of follower count. People have also started to use the hashtag on other platforms like Instagram and TikTok, but we don’t actively boost posts on those platforms right now so we’ll leave them to you to explore.

How does it work?

Brianne and Drew read every single tweet that is posted with the hashtag, and we add most tweets that need a boost to our retweet queue. Because we’re both sick, this can happen on a bit of an unpredictable schedule. Sometimes it takes a few days and sometimes we see new tweets within an hour, but we always read the whole backlog.

We use a tool called Buffer to manage the RT queue because Twitter will freeze your account if you RT too much, too often (ask us how we know). Buffer limits our RT queue to 100 tweets/day, which means there is often an additional lag from when we read & like any tweets in the hashtag to when we actually retweet them. We know the lag isn’t ideal, but it’s the best system we’ve got for now and we appreciate your patience.

What do you retweet?

Here’s an incomplete list of the type of stuff we usually boost:

  • Questions for the community about life with chronic illness, on just about any topic. 
    • Yes, we’ll RT new & anonymous accounts if you don’t want to have these kinds of conversations on your main feed.
    • Yes, you can submit questions anonymously by DMing the Anons In The Void account, which is run by sam.
    • Yes, you can ask lots of questions at once in separate tweets if you happen to have lots of separate questions to ask.
    • Yes, it’s okay if your question is “in a flare, send cat pics?”
  • Individual fundraisers from within the community.
    • We try to retweet every personal fundraiser although we don’t usually see them right away.
    • Yes, you can post your fundraiser repeatedly, every day, and we will keep retweeting it.
    • We know that retweets don’t always translate to financial support, but we just want to be clear that we will never ever be annoyed that you’re sharing your fundraiser too much.
  • Non-commercial community resources on just about any topic.
    • Yes, it’s ok to promote your own stuff, but please let us know in the tweet why what you’re sharing is relevant. We won’t boost links with no context.
    • Yes, it’s fine to share awareness & organizing campaigns, but again please let us know in the tweet why the campaign is relevant to our communities.

What don’t you retweet?

Mostly, we don’t retweet exclusionary content.

Because anybody can become chronically ill, our communities include people with diverse experiences and backgrounds. Multiply disabled folks, fat liberationists, BIPOC, trans & nonbinary people, undiagnosed folks, and [people who exist along other axes of marginalization] are all cherished and essential members of our communities, and so we try our best not to retweet anything with stigmatizing or gatekeeping language, assumptions, or dog whistles (let alone more hateful language). Sometimes we will make mistakes, and we invite you to call us in by (once again) posting about it using the hashtag so that we see your thoughts, or by sending an (optionally anonymous) note to Brianne via the contact form.

We know that language is always changing and that aphasia and other kinds of brain fog sometimes interfere with the best linguistic intentions. We usually let people know why we aren’t retweeting something if an easy tweak would make a difference, so you’ll have an opportunity to rephrase if you want to.

Notes on access:

For the sake of simplicity, let’s assume that everybody using this hashtag is disabled, including people whose disabilities impact communication. Please include alt text with images and gifs whenever you can (here’s how to use alt text on Twitter), and please describe any videos you share for folks who can’t watch. If your brain is too foggy to describe media, that’s ok! Make a note in your tweet that you need help with alt text or descriptions so that somebody with a less foggy brain can support you.

We know that Twitter is full of trolls, but when you are reading and responding to tweets within #NEISVoid please try and be generous about interpreting tone whenever possible. Many of us are using Twitter at times when most other platforms are inaccessible due to pain or sensory overload or aphasia or uncountable other reasons, and may be using the hashtag to try and connect to other people who understand what we’re going through even if words are just not working the way they usually do.

To help people protect their energy and their nervous systems, we may add content notes to some tweets before boosting. When we do this we turn off replies on the content note tweet so that nobody accidentally replies to us instead of the original question asker. Content notes can be so context specific that we really don’t expect people to keep track of our always-evolving list, or to use these tags in other spaces.

Looking for transcripts? Episodes 1-47, 54-57, and 62+ are fully transcribed.
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