What we’re about
***COVID19 Update: We are doing all meetings remotely at this time. Since many of our members are immunocompromised, we will continue to host meetings remotely (via Zoom or similar) for the foreseeable future - even after Bay Area counties relax their Shelter-In-Place restrictions.
An upside of doing our meetings remotely is that geographic locations is less of a restriction. We encourage anyone in the wider Bay Area to join our meetings. (For a time we were accepting people from all over the country but have found that discussions about recommended physicians, disability services, etc require a level of locality)
After a year of a fairly robust event schedule we are in a bit of a lull. Thank you for your patience.
Anyone who is interested in hosting/moderating a group meeting is encouraged to reach out to the Admin team. We'd love to empower members to lend their personal flair to meetings, and to keep the group activity robust. ***
------------- Original Group Description ------------------
This group is for anyone dealing with chronic illness, visible or invisible. Partners and direct caregivers of active members are welcome as well. Once a month*, we come together to support each other, hear one another's stories, find empathy from those who've walked a similar path, offer encouragement, and share the wisdom we've accrued from living with a chronic illness. We really look forward to meeting you!
P.S. Please be sure to include a recent picture of yourself, your first name and first initial of your last name, and answer both parts of the security question: tell us about your condition(s) and what do you hope to get out of this group. Your application will not be approved without this information.
General Meeting Format:
We start with a "check-in"; we take turns sharing what our illness is, how it has affected our day-to-day life, any updates since last check-in, any current obstacles or concerns, etc. Depending on the size of the group, we cap each person's check-in time at 2-5 minutes. Sharing during check-in is optional. The remaining time is spent on more open-ended discussion around chronic illness. Oftentimes the event host will take suggestions for specific topics, either during the meeting or beforehand.
If you've never attended a group meeting before, or need a refresher on our guidelines for participation, please see the notes below.
--------- Meeting Guidelines ------------
“The Big Five”
1. Please, no crosstalk or abrupt interruptions. During check-in each attendee will get a turn to share their situation and concerns. During open discussion your event host/moderator will ensure everyone gets a chance to speak.
2. No unsolicited advice. It’s great when people have a positive experience with a treatment, product, lifestyle change, etc. We’re happy to hear about these things, but what works for one person won’t necessarily work for another. If other members would like to know more they’ll ask you.
3. No ableism. Considering the nature of this group, ableism is rarely an issue. However, it can nonetheless crop up in subtle ways. For example: please don’t doubt the veracity or severity of someone else’s condition or symptoms. Keep in mind that even people with the same diagnoses can have differing manifestations and limitations.
4. Confidentiality is the default setting. This group is intended to be a safe space where people can talk openly about their chronic illnesses. Please consider all personal information to be confidential. Please do not discuss another member’s illness or life circumstances without their express permission.
5. Be compassionate and mindful. Ultimately everything else derives from this. Anyone who attends this group is dealing with difficult circumstances; be nice to one another. We try to maintain a sense of humor and joviality, within reason.
General common courtesies, best practices, and video conferencing tips:
- When possible troubleshoot your tech before a meeting starts. We don’t mind waiting a few minutes while people sort out their audio/video/connection etc, but we can’t hold up the rest of the group for long. If you message an organizer in advance we may be able to set aside a few minutes to help you troubleshoot things before the group starts.
- If you do join late: please mute your mic, don't interrupt whoever is currently talking, and wait for your event host to find an appropriate break in the conversation to say hi. Generally we can set aside time for latecomers to do their check-in/share if they would like to.
- Using headphones instead of your computer speakers reduces feedback. Similarly, muting your microphone when you’re not speaking reduces interruptions from background noises (e.g. a phone ringing, a dog barking)
- Please don’t share the video chat links elsewhere online. “Zoombombing” - gatecrashing video chat rooms with malicious intent - is reportedly commonplace at the moment.
- If you use an initialism keep in mind other members might not know what you’re referring to. Consider elaborating, e.g. “I have POTS - Postural Orthostatic Tachycardia Syndrome. What this means is my central nervous system doesn’t automatically regulate my blood pressure the way it does for other people. For example, when I go from sitting to standing I can suddenly get very dizzy and tired. A change in temperature, like taking a shower, can also make me very tired and dizzy”
- The “Thanksgiving Dinner” Rule: topics such as politics and religion are best avoided. (...we do bend this rule very occasionally if the group size is small and like-minded)