This is a composite story, drawn from common experiences shared in the schizophrenia community. It does not depict a real individual.
I am 29, I live in Barcelona, and five years ago — during a long, lonely stretch after my second hospitalisation — I started an online community for people with schizophrenia. It was supposed to be a private chat group with a few people I had met through a forum. It is now an active online community with several thousand members across multiple platforms, run by a small volunteer team. This is what I have learned along the way.
Building an online community for serious mental illness is an act of mutual aid that has done more for my own recovery than almost anything except medication itself — but it has costs, and they need to be planned for.
Why online community matters
Schizophrenia is isolating in ways that other illnesses are not. The combination of stigma, cognitive symptoms, social withdrawal, and the simple statistical rarity of the condition means most people with schizophrenia do not know anyone else with it. When I was diagnosed at twenty-three, I had never knowingly met another person with schizophrenia. The first time I did — in a hospital common room three months in — I cried.
Online community lowers the activation energy of meeting other people with schizophrenia from "find a hospital" to "open an app." For people whose negative symptoms make in-person social events overwhelming, the asynchronous nature of online groups is a meaningful accommodation. The NAMI peer support framework and the long history of organisations like the Hearing Voices Network have shown that peer support meaningfully improves outcomes for people with serious mental illness.
How it started
The original group was twelve people, all of whom I had met on a public forum where we had been quietly recognising each other for months. We moved to a private chat application. The conversations were small and useful. We talked about side effects, families, hospital experiences, the small daily textures of life on antipsychotics. Within six months the group had grown to forty. Within a year, two hundred. We had to start thinking like an organisation rather than a chat.
The first hard lesson: rules matter
The first crisis came at about month nine. A new member arrived who was actively psychotic and posting at high volume — including, eventually, content that was directly distressing to other members (graphic descriptions of self-harm, accusations directed at other members, requests for medical advice that were not safe to answer). We did not have rules. We did not have moderators. We had me, awake at 2 a.m., trying to figure out what to do.
What I learned from that week:
- Rules are not a betrayal of community. They are what makes community possible.
- Crisis content needs a clear policy. Many groups have a "we are not crisis services" rule with explicit guidance to call 988 or local crisis lines.
- You cannot moderate alone. Even small groups need at least two or three trusted moderators.
- You cannot give medical advice. The group can share experiences but should never replace a clinician.
We wrote a short set of rules over the following month. The rules have been edited since but the core has not changed.
Building the moderator team
The single best decision I made was inviting four other long-time members to be co-moderators. They had stable enough lives to give time to the work, were known and trusted by the rest of the group, and represented a range of life experiences — different countries, different ages, different diagnoses (we welcome people with schizoaffective disorder and other psychotic disorders, not only schizophrenia).
The moderator group meets every two weeks by video. We discuss difficult posts, member concerns, and our own wellbeing. Burnout is a real risk for people moderating mental health communities. We rotate the heaviest categories of work and we encourage moderators to take breaks.
What the community does well
- Practical advice on side effects. Members share what worked for them with weight gain, sedation, drooling, akathisia. None of this is medical advice, but the lived experience is genuinely useful.
- Hospital preparation and recovery. Members exchange tips on what to bring, what to expect, how to advocate for themselves. See our piece on what to expect in a psychiatric hospital.
- Just being known. Sometimes the most useful thing the community offers is the presence of people who already understand, with no explanation needed.
- Information triage. When a new study or news story comes out, the community helps members understand what is actually clinically relevant and what is hype.
What it does not do
- Replace professional treatment
- Provide crisis services
- Offer medical advice
- Diagnose
- Substitute for in-person social connection (it can complement it; it cannot replace it)
What it has cost me personally
Running the community has cost me something. There have been weeks where I have spent more time on it than was good for my own mental health. I have had to step back twice for stretches of a month. I have had to learn that my own stability has to come first, and that the community will continue if I take a break.
I have also been exposed to a lot of other people's pain. The stories I have read have changed my sense of what schizophrenia is and what it does to lives. Most of those changes have been deepening and useful. Some have been hard to carry.
If you are thinking about starting or moderating an online community for serious mental illness, take this seriously. Plan for the personal cost. Have your own therapist. Have your own care team. Take breaks before you need them.
What I would tell someone starting now
- Start small. Twelve trusted people is a better foundation than two hundred strangers.
- Write rules in the first month. Even simple ones. Update them as situations arise.
- Recruit moderators early. Do not try to do this alone.
- Have a clear "we are not crisis services" policy with explicit links to actual crisis lines.
- Decide what kind of medical content is allowed. Sharing experiences yes; giving advice no.
- Stay off the platform when you are in crisis yourself. Your own care comes first.
- Connect to existing organisations. NAMI, the Hearing Voices Network, your country's equivalent — they have decades of experience and useful templates.
- Plan for what happens if you cannot continue. Communities should not depend on a single person.
What I have gained
I have a network of people in a dozen countries who know me, know my diagnosis, and who I can turn to in ways my non-schizophrenia friends cannot quite manage. I have learned more about my own illness from other patients than from any single clinician. I have found a small sense of purpose at a stage of life where purpose has been hard to come by.
None of this is a substitute for what online community sometimes promises and rarely delivers — a feeling that you are no longer alone, that you no longer need other support, that the internet has fixed something. The community has not fixed anything. It has joined other things — medication, therapy, family, my small Catalonian apartment with its narrow balcony — that together make a life I did not expect to have.
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.