~ Our Future ~
9/14/25 — Teal
"So, you’ve clearly put a lot of effort into The Recystance. I assume you’re not throwing this all in the trash after your beta completes. What would The Recystance be, if the sky was the limit?"
Well, thanks for asking and really acutely noticing just how cool I am for putting so much effort into this. That was really hot.
Existential issues and new groups:
First and foremost, we’d have more facilitators and support groups. Ideally, support groups would be available to people across all (or at least more) languages and ages. I remember being a youngin’ with this condition, it flupping sucked. Unfortunately, that would be a sticky wicket for several reasons, including liability and mandated reporting. But if The Recystance did become a fully fledged operation or bona fide non-profit-y sort of thing, it could be an option. We could even have some groups that are open and designed for drop-in and some that are closed, like the beta.
Expanding our volunteer capacity is the most immediate concern. Obviously, it impacts how many support groups we can operate, but it would also help me stay on top of the website and its resources. Having volunteers willing to write articles, organize resource directories, and help get the word out, would be amazing. I would suck an eggplant to have someone who knows web dev involved in The Recystance. Organizing all this was a nightmare for my puny brain.
Building The Recystance community and fun stuff:
It would also be ideal to have dedicated social media avenues for The Recystance and by extension HS. Keenly, a Discord and Facebook group. I’ve moderated those groups before and I’ve learned online neighborhoods can go downhill very quickly. It would probably be for the best to have a team for that project.
I also plan to bring social events into the fold, like movie nights and hang-outs. Not to absolutely obliterate the dead horse here, but having more facilitators would accelerate that.
In-person support groups and Recystance events:
I think it would also be pretty pog to take some of these things, support groups, community events, and otherwise, in-person. I haven’t fully envisioned how to do that or what it would look like, but it’s something to consider once I have more experience with this all. We might need money for that.
Groups for family and friends of HS survivors:
The broader HS community, our family and friends, need help too. My partner has taken care of me on many bed-bound days and I have seen the toll it has taken on her first hand. Obviously, there are some cultural things to keep in mind with this like not aggrandizing our supporters and elevating their experiences above ours, which happen all too often with “ally organizations.” Still, it would be good for them to have some support groups too, if they want them.
Donors and increasing accessibility:
I know I’ve already gotten pretty far ahead of myself on this page (and everywhere else really) but having some money in the organization would probably mean good things. Unless power corrupts. I am the senate, and all that. One of the immediate things we could do is offer “grants” to community members who want to join support groups but can’t because they don’t have any suitable tech. It would also greatly improve our marketing and web capabilities. I’ve also been a part of orgs where volunteers get a small stipend to ease the burden of being, well, a volunteer. That wouldn’t be so bad.
Cultural and organizational changes:
Finally, if we keep existing that is, I expect big waves to come in terms of our organization. As is, The Recystance is just one big throw-up of everything that was in my head. That means there’s sure to be a lot of mistakes, both fine and systemic. I’m down for things to change and for volunteers and community members to bring said change.
