Generation Lyme

Brooke Stoddard, Generation Lyme Co-Founder

View the original post on Medium; original post date: May 27, 2020

Ten years ago, I contracted Lyme disease. I experienced a wide range of difficult symptoms. It took four years to get diagnosed, and I have been treating it for six years. Thankfully, today I am about 95% better.

Ten years ago, I did not know anyone with Lyme disease. I had no idea that Lyme disease caused physical and emotional challenges that in my case, were life-changing and gave me a sense of purpose.

My journey toward better health was stressful, uncertain, and lonely. And — that is exactly why I co-founded Generation Lyme, a community to empower young people facing Lyme disease.

When I met John, Jesse, Haley, Zach, and Mark two years ago, each of us had struggled with Lyme disease, and we wanted to help other people just like us. We were ready to build a non-profit, but we weren’t sure what to create.

We believed in storytelling. We thought — If we could interview Lyme disease patients and tell their stories authentically, then that was worth doing. We were inspired by Humans of New York, and we believed that Lyme disease patients could inspire others with a caption and a picture on Instagram.

We also believed in the power of community. We thought — if we could just help Lyme disease patients meet each other, and inspire each other, then that was worth doing. That would help people during their individual journeys toward better health.

These two principles inspired our two main initiatives: Generation Lyme Stories & Generation Lyme Meet-Ups.

Generation Lyme Stories

To date, we have shared 35 stories of Lyme disease patients on Instagram. These stories are authentic, inspiring, and informative. Occasionally, people comment on them, tag the account, and share the posts. We love that. But for me, the most meaningful aspect is knowing that Lyme disease patients across the country — who might feel lonely — are reading those stories and feeling hopeful, inspired, and part of the Generation Lyme community.

Generation Lyme Meet-Ups

On Saturday, we hosted our 30th Generation Lyme Meet-Up of the year. Generation Lyme Meet-Ups are safe spaces where Lyme disease patients can meet each other, ask questions, share their stories, and discuss the experience of Lyme disease. Every week, we host 3 Meet-Ups on Zoom, so that you can join, no matter where you live.

Over 350 people have attended a Generation Lyme Meet-Up this year. I try to attend as many as possible. We love Generation Lyme Meet-Ups because all of you make us feel encouraged, inspired, and hopeful.

You Are Generation Lyme

Generation Lyme community members are just like you. They live in every part of the country, from big city to small town. Some are students, some are working full-time, some are working part-time, and some are not working at all as they focus on their health. They have talked to LLMDs, read research dedicated to Lyme disease, and explored traditional, western medicine, and natural, holistic treatments and lifestyle adjustments in an effort to get better. No matter where you are in your personal journey with Lyme disease, Generation Lyme is here to cheer for you.

If you have Lyme disease or know anyone who does, then you are part of Generation Lyme. We think you’re amazing, and we’re glad you’re here.

If you would like to get involved, DM us on Instagram (@generation_lyme).