My desire for community and connection long before I ever hosted a support group of my own is what planted the seed for Fiber Craft Fridays.
During my diagnostic odyssey (and even moreso after diagnosis), support groups became a lifeline.
They were places where I didn’t have to explain myself, justify my symptoms, or translate my experience.
Groups hosted by The Mast Cell Disease Society and Dysautonomia International offered connection, validation, and education when I needed it most. Even the former support groups from The Ehlers-Danlos Society, before they were temporarily discontinued, provided meaningful community during an especially isolating time.
Those experiences stayed with me. They showed me how powerful it is to sit in a space where everyone gets it. I was connected with some of the most understanding individuals… and they were in the same place I was in. Hoping for connection, dealing with complex medical concerns, and wanting a safe, comfortable space to be themselves.
And that’s what inspired me to create Fiber Craft Fridays– a biweekly support group I now host with the Immunocompromised Association. I wanted to build a gentle, low-pressure space where immunocompromised folks could gather safely, create with their hands, and connect with others who understand the realities of chronic illness and complex medical lives.
Fiber crafts have a quiet kind of magic.
Knitting, crocheting, weaving, stitching, or even just watching others create can calm the nervous system, ground the body, and give the mind something steady to focus on. When paired with community, that creative rhythm becomes healing for morale and spirit.
It’s not about productivity or perfection. It’s about presence, peace, and shared humanity.
Fiber Craft Fridays is something to look forward to every other week. A familiar space. Familiar faces. A reminder that even when our bodies are unpredictable, connection can still be consistent.
If you’re chronically ill, disabled, immunocompromised, homebound, or have a nonapparent disability and desire community… I highly recommend checking out what different nonprofits are offering for patients like us. The links below will get you connected to some of the best resources I’ve found thus far for community and connection.
👉 Immunocompromised Association
👉 The Mast Cell Disease Society
👉 The Ehlers Danlos Society
👉 Dysautonomia International
Community saves lives. Sometimes it also helps us make something beautiful along the way.
Emotional Support
In the US, the 988 Crisis Lifeline is available any time of day. Call, text, or chat at 988 for free, confidential support.
SAMHSA National Helpline – Free and confidential referrals for mental health and substance use treatment, available 24/7 at 1-800-662-HELP
Food Allergy Support Groups (near you) – Click here to be redirected to FARE’s Website- here you can filter through in person and virtual support groups all throughout Australia, Canada, Mexico, and the US.
Support Groups Available Over Zoom
The Mast Cell Disease Society offers several from Sexuality Support, Fiber Crafts, and Undiagnosed Support. Check out their offerings here. They also host a private support group on Facebook connected to their public page.
Disclaimer:
The content shared on How to Not Die is intended for entertainment and conversation purposes only. Nothing on this site should be interpreted as medical advice, diagnosis, or treatment. The information provided is not a substitute for professional medical guidance. Always seek the advice of your physician with any questions you may have regarding your health, medical conditions, or food/ treatment options. Never disregard or delay seeking professional medical advice because of something you’ve read here. You take full responsibility and liability if you choose to replicate or recreate any of the experiences you’ve read here.
Hi friends! My name is Lauren. Thank you for being here and for making it this far. If you like what I’m doing here and want to support me/the blog – feel welcome to follow along on Instagram or TikTok– where we’re over 6.2k strong! You’re also welcome to Buy Me a Cup of Coffee (isn’t that cool? I’m learning something new everyday!). Click around for some of the best resources I’ve found for food allergies, clinical trials, and drug info. If you have any questions, don’t hesitate to reach out. I’m also accepting patient stories, if anyone’s interested in sharing their rare disease experience or looking for a place to share their diagnostic odyssey or promote your blog/business – reach out to me, I’d love to elevate other rare voices. I’m so happy you’re here and happy you’re alive for another day. <3 XoXo, Lauren
