Today we’d like to introduce you to Long Covid Collective.
Hi Long Covid Collective, we’re thrilled to have a chance to learn your story today. So, before we get into specifics, maybe you can briefly walk us through how you got to where you are today?
In 2024, a group of locals with Long COVID connected through the ATX Long Haulers Facebook group. This page was designed to connect members of the growing Long COVID community and serve as a safe space for us to share stories, seek feedback, and connect over our shared illness experience. Upon talking, we soon realized there were few to no social support systems in place for people with Long COVID. Each of us had been left to our own devices and were struggling to find the right doctors, practitioners, medications, treatments, and social and emotional support as we adapted to life with this isolating and misunderstood chronic illness. So, we decided to found our own.
Born out of the desire for communal support and motivated by our own experiences and struggles, we created the Long Covid Collective to provide a platform for connection, engagement, and shared wisdom. The organization initially began by offering a weekly support group for people to share their stories and bond over communal experience, hosted through the ATX Long Haulers Facebook group. Late last year, we began experimenting with a meal train initiative to deliver healthy, chronic illness-friendly home cooked meals to our members in need. Unfortunately, we had to pause this program due to limited funds and resources.
Earlier this year, we began brainstorming. How could we better serve our community in the most effective and meaningful way? Those sessions led us to our current virtual network approach.
Today, we aim to support our community by offering virtual networks for our members to engage, connect, and rediscover hope in our new lives. To-date, we’ve launched our Community and Creative networks which include community engagement opportunities, events, and creative avenues for expressing our experience through art. Our most recent project is a photo documentary project within our Creative Network in collaboration with local photographer Virginia Hernandez. The project, which includes photo and video storytelling elements, aims to shed light on the experience of Long COVID for women. The Collective will be showcasing the project at the Texas Archeology Month Fair at the Bullock Texas State History Museum on October 5th, and hopes to also host a gallery showing later in the fall.
We’re currently working on establishing our Health & Wellness Network, which will feature curated directories designed to connect long haulers with Long COVID-friendly accepting practitioners. We do not endorse any one approach, method, or service, but rather aim to provide a collective of knowledge, opportunities, platforms, and resources and to meet each member where they are in their journey and offer them a sustainable path forward, in mind, body, and spirit.
I’m sure it wasn’t obstacle-free, but would you say the journey has been fairly smooth so far?
Nothing about founding a Long COVID support organization has been an easy road. To start, Long COVID is a widely misunderstood and dismissed disease. Largely because of its new nature and controversial origins, many people, everyday citizens and medical professionals alike, doubt its existence and prevalence. Doctors often tell patients their symptoms are caused by anxiety or other ailments, and family and friends cannot understand why their parents, spouses, or children just can’t get better following infection. Nowadays, government jargon and changes to federal grant and research funding further threaten the availability of aid this growing community so desperately needs. Yet, the impacts of COVID-19 are undeniable. This illness is real, and it’s affecting people’s lives.
If the process of founding a nonprofit isn’t complicated enough, all of the Collective’s leaders are suffering with the impacts of their own Long COVID experience. We’re still sick, and just caring for ourselves takes up a great deal of our energy every single day. Many of us have been forced out of work and other activities we used to enjoy. Some of us have been sick for years. Coordinating a group of chronically ill people struggling with both physical and cognitive limitations to form a ground-up nonprofit may seem like an impossible task. Yet, one thing moved us forward – hope. Not despite but because of our own circumstances, we dared to dream of a future better than the one that currently exists. A support system stronger than the one we entered into when we got sick. We envision a future where people in this community aren’t dismissed or left alone without answers. We believe that engagement, community building, and tailored resource structures can help others like us to navigate this disease so that for all that Long COVID takes from us, we can build something better and stronger in its place.
We cannot rely on others – society, the government, or medical professionals – to do the work for us. We are the ones who understand Long COVID because we’re the ones who live it. While everyone’s experience is unique and we cannot offer a one-size-fits all approach to healing, we are the ones who must find ways of supporting ourselves. That is why we do what we do. Our determination to use our own experiences and struggles to help others is what keeps us going every day, and seeing the impacts that the organization has had on our community makes it all worth it.
Thanks for sharing that. So, maybe next you can tell us a bit more about your work?
The Long Covid collective is unique because it seeks to offer a holistic path toward healing – in mind, body, and spirit. We aim to provide our growing community with a network approach to connect them to what they need for healing, adaptation, community, and support. We offer regular Long COVID and chronic illness support group meetings every Friday on Zoom at noon Central Time, and are working towards a series of virtual events and opportunities to foster connection and meaningful engagement. We aim to collaborate with artists to showcase the work of local creatives with chronic illness to provide them a platform to share their work and engage with people who crave creative outlets, but can no longer engage with their passions like they used to before falling sick.
There are plenty of organizations doing research on this disease, and offering treatments, trails, and other avenues for physical symptom mitigation. We are not those organizations. We are the organization that will hold you and lift you up emotionally by surrounding you with a community who knows what you’ve been through and wants to help. All of our programs and resources are designed by and for those with chronic illnesses. We know how to serve our community because we are that community. At the end of the day, our goal is to help everyone with this illness build a life that is still meaningful, engaged, and full of hope, even if that looks different than their former life. We believe it is possible, because we’ve done it ourselves. The Collective has given all of us, leaders and members alike, a way to rediscover meaning by giving back to this community.
What sort of changes are you expecting over the next 5-10 years?
Long COVID and chronic illness aren’t going anywhere anytime soon. Five years after the break of the pandemic, cases continue to spread and so will this chronic disease. Long COVID already affects millions of people worldwide, and it is expected that over 10% of all individuals who contract COVID-19 will experience some form of Long COVID. This is not a new phenomenon. Post-viral syndromes have been documented for countless other viral outbreaks over human history, and they will continue into the future.
People like to believe that the pandemic is over because that’s what feels safe. Many have the privilege of being able to do so. With their health, they are able to leave the memory of COVID-19 in the rearview mirror and forget about it as if it were a bad dream. But there’s a group of us who remain with one, or both, feet stuck in that past. We have been forgotten by a society that’s moved on. Pushed aside because our experience is uncomfortable, difficult to understand, and incurable. But we’re still here, and there are more of us every single day. We’re determined to help bring our stories, and lives, back into the light because we deserve better.
Contact Info:
- Website: https://www.longcovidcollective.org
- Instagram: https://www.instagram.com/longcovidcollective/?next=%2F
- Facebook: https://www.facebook.com/LongCovidCollective
- Other: https://bsky.app/profile/longcovidcollect.bsky.social
Image Credits
Photoshoot image credits: Virginia Hernandez
