Our Community

Generation Lyme brings together people affected by Lyme and other tick-borne diseases from around the world. Our community is a place to find connection, friendship, understanding, and support from people who get it.

Meet the Community
Our Impact
Our Partnerships
Connect

Meet the Gen Lyme Community

“Ever since I got sick, I’ve been on the search for a sense of belonging, somewhere. I craved unity more than anything. @generation_lyme and the Lyme community on Instagram have given me this. A safe space. To be heard, validated, relieved, inspired, uplifted, to feel whole again.

Human interaction with people who get it—doesn’t seem like much, but damn does it make a difference.”


— Paulina, Community Member

A glimpse of our community, captured for Gen Lyme Day 2022

  • “This time last year I felt the loneliest I have in seven years of illness. And yet in 2020, a year of social distancing and staying home, I’ve actually been...more social and have much more to be thankful for than in all of my past years of illness.

    There are far too many people to tag, but I’m forever thankful for so many members of the chronic illness community who never cease to inspire, share openly and vulnerably in ways I rarely can, educate, and advocate, and support and respond wholeheartedly to people they don’t even know. I’m also thankful for the friends I’ve made within this community who have kept me sane during this dystopian hellscape, who give me strength when I don’t even realize I need it, and make me excited every time I look at my phone. Friendships not based on our illnesses, merely strengthened by them.

    And of course, the wonderful people at @generation_lyme for creating a platform where I could make most of said friends and connect with hundreds of Lymies, and rising to the occasion during the pandemic and having multiple Zoom calls per week (I think some weeks there’s FIVE now.)

    Last December, at the tail end of a particularly demoralizing Lyme flare, I forced myself to my first ever Gen Lyme meetup in person. It was there I first met Jesse, who recommended my current doctor—who has been a revelation—and Jennifer, who I’ve been getting IV’s with weekly since August, who along with Haley and Jessica has made getting poked with needles the highlight of my week, their presences keeping me from passing out a few times.

    I went to that first meetup looking for community and friendship, and instead I found a family, and more support than I’ve ever had.”

    — Gus, Community Member

  • @generation_lyme saved my life 💙💙 such amazing community builders. So grateful. 🙏🙏

    —Jess, Community Member

  • This community is my lifeline! I honestly don’t know how I’d get through this crazy Lyme life without it. Thank you for all you do.

    — Amber, Community Member

  • Literally don’t know what I would do without my Lyme community @generation_lyme.

    — Karli, Community Member

  • The support I received from this group helped save my life. Having someone tell you that you’re not alone and that your feelings/symptoms are valid is everything. Come to a Meet-Up.

    — Grace, Community Member

  • You guys are EVERYTHING! Making this Lyme journey much less lonely.

    — Tiffiany, Community Member

  • I love you @generation_lyme ❤️ Thank you for becoming my family this year!

    — Shelley, Community Member

  • I have never once logged on to a @generation_lyme call and not felt better afterward. ☺️ Very glad to have found this group. 💙

    — Caroline, Community Member

  • You guys by far are the best at running a Lyme support group. So if anybody’s listening and they have doubt and they want to try a support group, your support group is the one to start with because you guys have perfected the skill of running an effective and helpful support group for Lyme patients.

    — Matt, Community Member & Tick Boot Camp Podcast Host

  • “If you are someone battling Lyme disease and looking for support, head over to @generation_lyme and hop on a weekly Zoom call. I promise this group of warriors will accept you with open arms.”

    — Jess, Community Member

  • “A few years ago, I would’ve never put myself out there publicly as a Lyme patient. And that was good and right and what I needed at the time. Today, I feel super stoked about joining the aesthetically pleasing blue and badass checkerboard of people on this feed. These are people that I respect. They’re my friends.”

    — Gail, Community Member

Gen Lyme Day 2021 Community Q&A

Gen Lyme Day 2022 Community Q&A

Community is not an add-on or a luxury.

It’s part of supporting the whole person.

Community Impact

Generation Lyme partners with organizations to increase our collective impact and better serve people affected by Lyme disease and other tick-borne diseases everywhere.

1000+

Meet-Ups

Hosted

6 Global

Continents

Represented

50

US States

Represented

20K+

Meet-Up

Attendees

Community Partnerships

Generation Lyme partners with organizations to increase our collective impact and better serve people affected by Lyme disease and other tick-borne diseases everywhere.

Center for Lyme Action is a nonprofit with a mission to grow federal funding for Lyme disease and significant experience and expertise in leading meaningful legislative change. The organization has been at the forefront of advocacy efforts to combat this widespread but often misunderstood illness. Since its inception in 2019, Lyme and tick-borne disease funding has grown from $59M in FY20 to $177.5M in FY24.

Logo of Center for Lyme Action featuring a black tick inside a green circle with 12 white stars around it.

Founded and facilitated by Autoimmune Association, the mission of the NCAPG is to convene, support, and amplify the voice of autoimmune disease patients and autoimmune patient groups to enhance capacity, collaboration, and impact through advocacy, education, awareness, and research concerning all aspects of autoimmune disease.

Logo of the National Coalition of Autoimmune Patient Groups, supported by the American Autoimmune Related Diseases Association, Inc.

Connect with Us

There are many ways to be part of the Generation Lyme community, whether you’re living with Lyme or another tick-borne disease, supporting someone you love, or simply want to stay connected.

Join a Meet-Up
Find connection and support with people who understand.
Explore Meet-Ups→

Volunteer
Support the community as a Meet-Up host.
Volunteer With Us→

Share Your Story
Add your voice to the experiences our community shares.
Share Your Story→

Stay Connected
Follow Generation Lyme or sign up for updates.
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Meet another one of our amazing hosts, Jess Eaton! Jess was a regular at our Meet-Ups for years, looking for a space where she could connect with people who truly understood what living with Lyme can feel like. After experiencing firsthand how mea
Chronic illness has a way of changing the timeline you thought your life would follow. There may be things you’ve had to grieve, expectations you’ve had to rewrite, and versions of yourself you’ve had to let go of. But maybe growth
A glimpse into someone else’s experience can sometimes make us pause and see our own a little differently. Today's collection comes from @kaleighmschmidt A note from the artist: "I started drawing to process and cope with the changes that
This one has been waiting patiently in our submissions folder, and we’re excited to share it. 💙 Originally submitted for World Poetry Day, this poem offers a glimpse into the Lyme experience through the poet’s own words. Give this piec
Some things are easier to create than they are to explain. Today’s piece comes from @stevesavitz A note from the artist: “This abstract doodle is a person standing in the grass, staring into the abyss and reflecting on the grand aspirat
A little piece of the Lyme experience, shared by @grantmuehlhauser Take a moment to read and connect with their poem. And if it resonates, let them know in the comments.
Today’s poem comes from community member Sky, A little piece of their real experience, put into words. If this speaks to you, show Sky some love in the comments. Like, share, save — whatever feels right.
Another creative doodle submission from @stevesavitz A note from our artist: "Drip Room" is for everyone who has ever had to throw their sunny days in the trash while gambling on a new “treatment" in an IV room, THE CLOCK OWES U
Today we are sharing a collection of creative doodles from @emmaroseartoflyme A note from our artist: "Doodling was my catharsis during the many dark nights of the soul when I was first bit and diagnosed with Lyme. They are physical representat
Today's poem comes from Britney Burkart. @britjean22 Britney shares a powerful poem about the darkness associated with living with Lyme disease, a feeling many of us relate to. Show our poet some love by liking, commenting, and sharing this post.
Meet one of our amazing Meet-Up hosts, Addie! Addie has been a part of Generation Lyme for a few years now; you may recognize her from videos on our socials, as well as being a host and attendee of many Meet-Ups. We did a short Q&A with Addie s
Today's creative doodle submission is from community member Steve. A note from our artist: "I think we can all relate to manufacturing joy on our sickest days while listening to “normies" tell us about their spectacularly lucky lives
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