Generation Lyme Day
A new holiday to celebrate the people of the Lyme community
by Jennifer Hoffmann
There was no holiday to celebrate the people of the Lyme disease community. So we created one.
On Saturday, August 21, 2021, our community will come together to honor everyone whose lives are impacted by Lyme disease. We will celebrate each other for who we are, far beyond our illness, and give recognition to wherever we are in our journeys. It will be an all-day virtual event with guests and community representation from across the country, facilitated by our four-person Generation Lyme team: Jesse, Brooke, Haley, and Jennifer.
Lyme patients are often overlooked and always fighting. At best, we get recognized for our illness. We want to provide something more — a celebration of the value of our lives.
The People
Generation Lyme is a patient-support initiative of Project Lyme, a 501(c)3 nonprofit dedicated to Lyme disease research, education, advocacy, and support. As a community built to empower people facing Lyme disease, Generation Lyme embraces the patient support role.
At Generation Lyme, our mission is to provide a space where Lyme patients and loved ones can feel welcome, safe, supported, and inspired. We empower patients and families by bringing them together and showing them they’re not alone. We are all volunteers and Lyme disease patients ourselves. We work hard to provide this space because we have personally experienced the need for it, how helpful it can be to mental and physical well-being, and how under-served and unseen the Lyme disease community is at large.
One of our community members, Gigi, put it best when she said: “Lyme is often viciously lonely; most people in our lives don’t understand how sick we are.”
We are working to change that — one connection, one story, and one day at a time. We offer two main services:
Story Sharing: We share patient stories on social media (Instagram, Facebook, podcast platforms, and YouTube). We aim to share the full range of ways Lyme disease impacts lives. By sharing the human realities of this invisible epidemic, we bring attention to a problem that needs to be solved and offer recognition and hope to those who are experiencing it right now.
Meet-Ups: We hold regular Meet-Ups (consistent support groups with well-trained hosts). Since starting online Meet-Ups in 2020, we have held over 300 Meet-Ups serving nearly 4,000 participants, including patients, caregivers, partners, and other supporters. One of the best avenues of support for Lyme patients is a direct connection with other patients. Meet-Ups are safe spaces for Lyme patients and supporters to meet, ask questions, and share experiences.
For patients who often can’t leave home or get out of bed, let alone find people in their lives who understand what they’re going through, this community can become a lifeline. Our community is strong, hopeful, inclusive, and always growing. For as long as Lyme disease remains a problem, Generation Lyme will be there to provide support.
The Science
Lyme disease is the fastest-growing vector-borne infectious disease in the US. According to the CDC, there are 476,000 new cases of Lyme disease in the US each year. This number was updated in 2021 from the CDC’s previous estimate of 300,000 new cases each year, and it does not reflect those with a long-term illness or who suffer false negatives due to inaccurate testing.
Lyme disease is a deeply intersectional issue. It is a public health problem that converges with racial, socioeconomic, disability rights issues, and more. Even more broadly, it intersects with concerns about climate change.
In addition to the bacteria Borrelia burgdorferi, a tick can transmit other contagions called co-infections, many of which can cause long-term, debilitating symptoms. Lyme disease itself is challenging to diagnose due to imperfect diagnostic criteria, inaccurate testing, and varying symptoms from person to person. Co-infections can compound the difficulty.
When a Lyme disease diagnosis is missed or delayed, the illness can progress to late-stage Lyme, in which ongoing, widespread, multi-systemic symptoms are present. Lyme disease has been proven to persist (survive) against antibiotic treatment, as well. This can result in a long-term illness with recurrent symptoms that can affect the cardiac and nervous systems and even cause death.
The Battle
Lyme is commonly misdiagnosed as Fibromyalgia, MS, Lupus, ME/CFS (Chronic Fatigue Syndrome), Alzheimer’s, and autism. Despite the CDC-reported 476,000 new cases in the US each year, only $63 is allocated per patient in NIH NIAID research funding–less funding than for much rarer infectious diseases. For example, West Nile (2647 cases) allocations are $13,600 per patient, and Malaria (1700 cases) research affords $118,823 per patient. A majority of long-haul Lyme patients have to pay out of pocket for nearly all of their treatment. Currently, there is no cure for Lyme disease, though remission is possible.
The number of ticks is reportedly on the rise. In 2021, the state of Connecticut counted more than double the number of ticks through the end of April than it did last year, citing warmer temperatures as the likely culprit.
As our group has stated in earlier writing, “Lyme disease patients face two uphill battles: one for a diagnosis and the other for proper treatment. Patients are resilient and have powerful stories to tell but cannot fight this battle alone. Countless people across the US and abroad have gone unheard for too long. They have been called ‘crazy,’ ‘attention-seeking,’ and ‘just depressed.’ Despite desperate searching, they rarely receive viable treatment options.” And, often worst of all, they feel utterly alone.
Generation Lyme exists to combat this isolation. No one with Lyme disease has to go through it alone.
The Holiday
Gen Lyme Day is a holiday worth celebrating. As Lyme disease patients, we are always fighting. Sometimes it’s hard to feel like we can ever be recognized for anything but our disease, that we deserve more, or that there’s a space for us to enjoy as we are. Gen Lyme Day is here to change that.
Gen Lyme Day is about taking a day to amplify this generation of Lyme patients and to celebrate the people beyond the disease. It’s a day to bring us together, give us hope, and keep our cause moving in a positive direction.
It will be a fully interactive day that anyone and everyone can attend, for free, from home.
We’re planning fun, relaxing, at-home ways to enjoy the day together. We’ll be sharing stories, boosting the voices of our community, going live on Instagram throughout the day, interviewing special guests from across the country, recording a live podcast, hosting our Saturday Meet-Up, and having an after-party (with a concert)!
Our message to our community is simple: We see you, we hear you, we value you, we celebrate you. We’re thrilled to bring joy to a community that doesn’t get to experience it often enough.
Join us on Saturday, August 21, 2021, for the first-ever Generation Lyme Day!
For more information, and the full day schedule, visit https://www.genlyme.org/genlymeday.
