Frequently Asked Questions


Can I come to Meet-Ups if I’m undiagnosed?

Yes! Meet-Ups are helpful places to learn from other people’s experiences in a way that can inform and validate your own.

Meet-Ups can also help point you in the right direction to help you get diagnosed or rule out tick-borne disease.


Will I belong at a Meet-Up if I’m feeling shy or don’t know what to say?

Yes! There’s a space for you at Gen Lyme:

  • If you have Lyme disease or any co-infections

  • If you’re undiagnosed and still seeking answers

  • If you’re feeling shy or on the fence about joining a call and just want to listen

  • If you want to talk a lot

  • If you’re a supporter (friend, family member, partner, colleague, etc.)

  • If Lyme has impacted your life in any way


Do I need to only talk about the monthly topic at a share meet-up?

Nope—the monthly topics are there to help you organize your thoughts. If you need to talk about something else or just want to use the monthly topic as a jumping-off point, that’s okay. More than anything, we want you at Meet-Ups! A monthly topic should never prevent you from joining a call. :)


What is a “safe space” and how does it work?

We are always striving to create a “safe space,” which is an environment in which a person or category of people can feel confident that they will not be exposed to discrimination, criticism, harassment, or any other emotional or physical harm, and where people can freely express themselves without fear of prejudice, negative judgment

What it means to be a "safe space:" Generation Lyme is dedicated to offering an environment where all people can feel confident that they will not be exposed to discrimination, criticism, harassment, or any other emotional or physical harm.
 

We cannot predict or control how all of our community members will feel on a day-to-day basis, but we can promise to try our best to create a space where they can come to connect and share what’s going on in their lives without judgment.

Check out our Zoom Terms of Service to learn more about the guidelines for safeguarding our community, including what is and is not allowed at Meet-Ups.


Why are gender pronouns important, and do they matter at Meet-Ups?

We strive to provide a safe space for all people, including members of the LGBTQIA+ community. Including our pronouns promotes inclusivity for all of us. Here are a few steps for giving and getting the respect everyone deserves:

  • Refrain from assuming someone’s gender

  • Respect the pronouns people provide for themselves if and when they offer them

  • If you misgender someone, simply apologize and move forward mindfully

  • Keep in mind that gender-neutral language exists in many languages

If these steps are new for you, that’s okay—we are committed to including you, too. For more resources, check out this page from the Virginia League for Planned Parenthood, which offers a lot of helpful information.


Where can I find your Tick Boot Camp Podcast episode?

Right here!

Episode 250: Generation Lyme: An interview with Brooke Stoddard, Jennifer Hoffmann, Jesse Ruben, and Haley DiBiase

“Generation Lyme has created a judgment-free meetup platform to defeat the isolation caused by Lyme disease.”


My child/friend/family member/loved one has Lyme. How can I help them?

Check out our Resources for Supporters, which include tips on how to help, how to navigate complex situations and relationships, details about Meet-Ups specifically tailored to you, helpful videos, blogs, and more.

More FAQ & Patient Resources


How can I find a Lyme-literate doctor?

We know how hard it is to find a doctor. Several of our peer organizations offer resources where you can access lists of healthcare providers known to specialize in tick-borne diseases. We hope one or more of these services helps you!


Where can I find financial assistance?

We know how financially devastating Lyme and other co-infections can be on patients and families. We’ve compiled a list of nonprofit organizations offering grant programs to patients needing financial assistance. Please note that Generation Lyme is not affiliated with any financial assistance program and cannot participate in grant processes or personal fundraising efforts.


I’m new to Lyme disease and want to learn the basics. Where can I go for information?

The following pages may be very helpful:


Where can I learn more about tick-borne diseases?

You’ll find a lot of helpful information on the following sites:


Where can I find information on housing and social services?

The financial, physical, and emotional toll of Lyme disease on our community can lead to housing insecurity. We have put together a list of housing resources available to help ease this burden:

Please note that Generation Lyme is not affiliated with any housing or social service operation, does not participate in providing housing assistance, and cannot guarantee any outcomes presented in the options linked here.

Additionally, you can check out the Social Service Connections for Lyme Disease Facebook Group. This group is US—based and not affiliated with Generation Lyme.


Where can I learn about the controversy surrounding Lyme disease?

The International Lyme and Associated Diseases Society (ILADS) has a comprehensive web page explaining the controversies and challenges in treating Lyme and other tick-borne diseases. We recommend you visit that page (or send any curious people there!) ILADS is a nonprofit, international, multidisciplinary medical society dedicated to the appropriate diagnosis and treatment of Lyme disease and its associated illnesses.