The Generation Lyme Community
“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. ”
“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.”
“I maintain that 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. 💚”
“@generation_lyme saved my life 💙💙 such amazing community builders. So grateful. 🙏🙏”
“I love you @generation_lyme ❤️ Thank you for becoming my family this year!”
“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.”
“You guys are EVERYTHING! Making this Lyme journey much less lonely.”
“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.
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“I have never once logged on to a @generation_lyme call and not felt better afterward. ☺️ Very glad to have found this group. 💙”
“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.”
“Literally don’t know what I would do without my Lyme community @generation_lyme.”
“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.”
Community Partnerships
Collaborations with our community partners aim to expand the impact of our respective organizations and improve the lives of countless people impacted by Lyme 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.