Mission Statement
The Recystance is a mutual aid organization focused on the hidradenitis suppurativa community. This means we are volunteer and community led to our core. All walks of life are included in our vision. HS does not discriminate between gender, race, or class, so neither do we. Our current goal is to create accessible, virtual support groups for those living with the condition.
We are currently in a very fledgling state where we are experimenting with what format the organization will take and how our support groups will operate. I use ‘we’ optimistically as right now I am the only volunteer backing The Recystance. In other words, hi, I’m Teal. I’m a person with HS, among other things. If you’re curious see the ‘meet the team’ page.
There is no corporation, brand, or non-profit behind The Recystance, but I have put a lot of work into this idea. Why? Because there’s little else my skills are transferable to and I’m in the market to spice up my life. It also wouldn’t be so bad if people who were really suffering from the condition, like myself, had another place to turn to.
As of now I consider this effort the beginning, hopefully, of a mutual aid organization that can help turn the tide on some of the adverse mental effects of living with hidradenitis. I am looking for more, perhaps many, people to join me as volunteers and community members. But right now my main goal is proof-of-concept: getting one support group going. The elusive beta.
FAQ
What is the state of our support group(s)?
As of writing, the state is: minimal. Exactly one support group is planned and it will function as a pilot program. If all goes well, after the beta, I’ll have some idea of what changes to make to the organization. I’ll also have had the time to shake some trees as to recruiting more facilitators and volunteers.
For the fuller details and to apply to join the support group please see our beta page.
What are the support groups like?
There are a few moving parts to the beta support group, all of which are covered on the beta page. First and foremost, it’s a peer model. It’s not professionally or clinically guided or supported. I’ve tried to take things in a different direction than that and base the organization around flat leadership, which I hope will bear fruits during our sessions.
The group does adhere to some rules, however, for the sake of keeping things mutually beneficial and inclusive. They are available on our rules page and they are subject to change as we grow. If anything, tailoring them to community needs and issues is key to our conflict resolution strategy.
My hope for the space is that it will be gentle and affirming.
The support group is called a ‘release group,’ what the eff is that?
Doctor-y support groups tend to follow certain structures, like ‘process,’ talking about the now, what emotions you’re currently composed of and how you might cope with them, and ‘content,’ venting or recounting past traumas or focusing on a group topic.
My version of things is the ‘release’ model; a combination of those strategies, a floor open to both storytelling and naming our emotions. And why stop there? We should be able to make friends, share laughs, and create networks. We should have an avenue to release some of the darkness caused by chronic illness. I’m no clinician, I only hope the tools of release can fall into everyone’s hands.
What’s the power dynamic like?
Generally speaking, the facilitator (just me right now) is about equal to the community member. They are not a mental health professional or any sort of authority on HS. They are a volunteer. Facilitators do happen to be in control of some aspects of the group environment. They may make certain adjustments to the group to ensure everyone is treating everyone else well and that the rulebook is minded (it’s pretty simple).
Who can join?
It’s currently only open to adults, age 18 years and older, of any geographic location. The groups are unfortunately, as of present, strictly English speaking due to the limitations of the current facilitators (I suck). Likewise, I have no means to provide internet access or tech to community members that might not have it.
Individuals living with hidradenitis suppurativa only. Though we acknowledge the ‘HS community’ includes medical professionals, friends and family of those with HS, and others, they are not the current focus of the support groups. In the future, after the most critical parts of the community are addressed, we may expand our horizons in that direction.
Medical care is a limited resource that not all have access to. We view self-diagnosis as a crude tool of empowerment for those who can’t get professionally diagnosed or don’t want to (which there are many completely valid reasons for). In other words, self-diagnosed members of the community are 100% and unapologetically welcome here.
Where do I go for questions, comments, and concerns?
Comms are wide open! Please feel free to use the email appended to the contact us page to arrange inquiry. I’m down to use other modes of contact but email is a good jumping off point for me.
