This is a composite story, drawn from common experiences shared in the schizophrenia community. It does not depict a real individual.
I am 33, a woman, and I live in Albuquerque. I have schizophrenia. Two years ago I started a small online support group specifically for women with schizophrenia. We meet every other Sunday on a video call. There are 34 of us on the roster now, with usually 12–18 on any given call. I want to write about how the group started, what it has become, and what I would do differently if I were starting again.
Why a women-only group
I had been attending mixed-gender peer support groups through my local NAMI chapter for about three years. They were good and important. They were also, in ways that took me a while to articulate, not quite what I needed.
The mixed groups handled the basics — diagnosis, medication, hospitalisations, family. What they handled less well were the questions that disproportionately landed on the women in the room: pregnancy and antipsychotics, menopause and antipsychotics, hyperprolactinemia and the related sexual side effects, decisions about having children, the way schizophrenia interacted with marriages, the experience of being misdiagnosed for years before being taken seriously. Gender disparities in schizophrenia care are real and well-documented; the experience inside the room often reflected that.
I had also noticed something quieter. In mixed groups, women often spoke less. There was a particular kind of openness — about bodies, about caregiving roles, about safety — that did not happen as easily across gender. I wanted a space where it could.
How the group started
I started small. I posted a message on the closed online forum of my regional NAMI chapter asking if any women with a schizophrenia spectrum diagnosis would be interested in a Sunday-evening video group, capped at twelve, peer-led, no clinicians present. I got eight responses in the first week.
The first call had six people on it. I had written a one-page document beforehand:
- Group purpose: peer support for women with schizophrenia spectrum diagnoses
- Confidentiality rules: what is said in the group stays in the group
- What we are not: not therapy, not medical advice, not a crisis line
- What to do in a crisis: call 988 or go to an ER; group members can support but cannot replace
- Format: 90 minutes, brief check-in, one or two topic discussions, brief closing
That document, with small revisions, has held up for two years. I read it aloud at the start of every call.
What grew
Word spread mostly through other peer support spaces and through one mention on a podcast about women's mental health. We grew from six to twelve to about twenty in the first year, then plateaued around 30–35 once people started bringing in someone they knew.
We added a private chat space where members could check in between calls. We added a guide-doc for new members so I did not have to repeat the basics every time someone joined. We added a monthly "topic Sunday" where we focused on one issue — pregnancy, work, dating, voice management, parents.
We have, twice in two years, lost a member to a long hospitalisation; both came back to the group when they were ready. We have, three times, had a member in acute crisis on a Sunday call; each time we paused the topic, helped that member contact 988 or her local crisis line, and then, after, debriefed as a group about what we had learned. 988 is the line we all know.
What worked
A clear scope
Saying out loud, every meeting, that we are not therapy and not medical advice has prevented every problem I had been warned about. People come for what we actually are.
Two co-facilitators after the first year
For the first year I led every call. I burned out quickly. After the first year I asked two members to be co-facilitators on a rotating basis. We now run the group three-deep, and the workload is sustainable.
An onboarding call before joining
I do a 30-minute one-on-one call with every new member before her first group session. I confirm the diagnosis is in the schizophrenia spectrum, walk through the rules, answer her questions, and make sure she has a baseline of stability such that the group will be useful rather than overwhelming. I have, twice, gently suggested someone wait a few months and come back when more stable. Both came back.
A predictable rhythm
Every other Sunday at 7 p.m. Mountain Time. Same Zoom link. Same opening read. Same check-in question. Predictability is regulating for everyone, and it has kept attendance steady.
What I would do differently
- I would build in co-facilitators from the start. Solo facilitation is unsustainable; I should not have learned that the hard way.
- I would set up clearer language about what to do if a member becomes unwell between calls. We figured this out reactively. A written protocol would have saved a hard week or two.
- I would have set the cap at fifteen, not twelve. Twelve was too small once two or three could not make it on a given Sunday.
- I would have started a private space for between-call check-ins on day one rather than year one.
- I would have spent more time, early on, on what membership means when someone is in active psychosis. We have learned that the group is not the right space for someone who is acutely symptomatic, and we have learned how to say that with care.
What the group has done for me personally
I am not lonely the way I was at 30. I have 34 people who know what my Wednesdays are like. I have at least four people I would call on a hard night without thinking about whether I was being a burden, because we have agreed that we are each other's hard-night people.
I have also, separately, watched my own self-stigma soften. It is hard to maintain a story about being broken when you spend two evenings a month in the company of articulate, thoughtful, funny women with the same diagnosis. They are obviously not broken. By extension, I am obviously not either.
The support group I started has become both the most useful contribution I have made and one of the most useful things in my own recovery, and starting was much easier than I had feared.
If you are thinking of starting one
- Start small. Six people is a real group.
- Write your one-page rules document before the first call.
- Make crisis resources visible. 988, your local mobile crisis team, your members' own care teams.
- Build co-facilitation in from the start.
- Know what your group is not. Therapy is not your job. Crisis intervention is not your job. Belonging is.
For related resources, see peer support specialists and building an online community.
This article is for educational purposes only and is not medical advice, diagnosis, or treatment. Always consult a qualified mental health professional. If you or someone you know is in crisis, call or text 988 in the US, or your local emergency number.