RECOVER Representatives create resources for people living with Long COVID
In response to needs they heard from their communities, RECOVER Representatives drew on their lived experience to develop practical resources that can help people navigate life with Long COVID.
People living with Long COVID often report that it can be a challenge to find reliable resources to help them navigate their condition. Although helpful information may exist, it is often scattered across various websites, organizations, and support networks. At the same time, many people living with Long COVID are navigating brain fog, fatigue, financial strain, workplace challenges, and difficulties finding care. Through their own lived experiences and through conversations with their communities, RECOVER Patient, Caregiver, and Community Representatives saw these realities—and knew there was an opportunity to help.
This year, RECOVER Representatives who take part in the National Community Engagement Group (NCEG) Communications and Engagement subcommittees worked together to create 4 new resources designed by and for the Long COVID community. Together, these tools aim to make it easier for people with Long COVID to find information, advocate for themselves, and access support. The tools include:
- A symptom tracker, which prompts people with Long COVID to take note of and record their daily symptoms to improve conversations with healthcare providers.
- A workplace resource guide, which provides tips for navigating work while living with Long COVID and how to best communicate with employers.
- A mental health resource guide, which helps people living with Long COVID take steps toward accessing mental health care.
- A financial resource guide, which includes advice for people who may need financial support because of their Long COVID.
The project grew out of conversations among Representatives about the challenges they and their communities continued to face. Based on these conversations, Representatives selected specific topics for these resources that were responsive to community needs. Community members shared the types of information that are often difficult to find, overwhelming to sort through, and often lacking the perspective of people living with the condition.
“I think [this work] really came from a natural conversation [with the community],” said RECOVER Patient Representative Liza Fisher. “We realized that people needed this, were wanting it, and that it needed to be created by us, for us.”
Resources offer tangible support across 4 different areas
The 4 resources focus on issues that Representatives identified as immediate priorities within the Long COVID community.
The Long COVID Symptom Tracker (PDF, 5 pages) helps people document symptoms across multiple body systems, identify patterns and triggers, and share information with their doctors. The tool was informed by personal experiences many Representatives shared about trying to communicate with healthcare providers about fluctuating symptoms and invisible disabilities.
RECOVER Patient Representative Lydia Lerma and her daughter, RECOVER Caregiver Representative Hyatt Vincent, collaborated with a team of RECOVER Representatives to develop the symptom tracker. Lerma, who lives with Long COVID, emphasized how difficult it can be to accurately describe symptoms during a medical appointment.
The resource encourages people to track symptoms, activities, and possible triggers over time. Representatives hope it can support conversations with doctors while also helping individuals better understand their own health.
“People might be able to see their own patterns,” Vincent said. “Is there a correlation with what I ate, or an activity that I did? Helping to identify those patterns is another crucial aspect of [this tool for tracking Long COVID symptoms].”
The Long COVID in the Workplace (PDF, 3 pages) guide focuses on another concern frequently raised by Long COVID community members: how to navigate employment while living with ongoing symptoms.
“I have had to have accommodations when I have [symptom] flare-ups,” Lerma said. “Luckily I work for an institution that provides paid sick leave, and I can take time and days off when needed during my flare-ups, which usually include extreme fatigue and neuropathy pain.”
The resource aims to help others facing similar challenges at work, bringing together information about workplace accommodations, disability rights, return-to-work programs, privacy protections, and educational materials that people can share with employers.
The Mental Health Resources for People with Long COVID (PDF, 2 pages) guide shares information about crisis and counseling support, peer networks, support groups, and RECOVER research related to mental health. Representatives recognized that the emotional and psychological effects of Long COVID can be significant, yet finding appropriate support is not always easy.
The Financial Resources for the Long COVID Community (PDF, 1 page) guide addresses another challenge many people with Long COVID face. It provides information about financial assistance programs, disability benefits, legal aid, fundraising support, and other resources that may help people manage healthcare costs and daily living expenses.
Lerma shared her firsthand experience with the financial uncertainty associated with navigating Long COVID. “When I got laid off from my job after developing Long COVID, I didn't have any means of income other than unemployment insurance benefits, and that benefit lasted just under a year,” she said. “I needed help to make ends meet and thankfully was able to find local, state, and non-profit organizations that provided resources to help me meet my financial obligations. The Financial Resources for the Long COVID Community [guide] would have been very helpful during that time, and I am grateful it is available now.”
Representatives also hope that bringing these resources together and making them available in one place on the RECOVER website will make them easier to find and use. “There are tons of resources that exist out there,” NCEG Co-chair Frank Blanceró said. “But if you ask a Long COVID patient what it’s like to find those resources, they will tell you it’s difficult. [The resources are] all really scattered.”
In addition to posting the resources on the RECOVER website, the Representatives plan to share them with their personal connections and networks. “I have a friend with Long COVID whose symptoms are much more debilitating than mine,” Lerma said. “I usually reach out to [her and others who need help with Long COVID] personally on Messenger or email and share what I know and what has helped me.”
Creating tools that validate experiences
Together, the 4 resources reflect the priorities that Representatives heard of directly from people living with Long COVID. “We asked people [with Long COVID] what they wanted,” Fisher said. “Then our subcommittees voted on which types of resources they wanted to work on.”
Throughout the development process, Representatives emphasized the importance of creating resources grounded in lived experience. For Fisher, one of the most important goals was validation. “Any resource that validates the lived experience is a resource worth having and will be impactful,” she said.
That validation can take many forms. For someone trying to explain symptoms to a doctor, a symptom tracker may help organize information. For someone struggling at work, a workplace guide may help explain available accommodations. For someone feeling isolated or depressed, a mental health resource may provide information on how to take care of their mind as well as their body.
Vincent believes the resources can help people feel heard. “It’s about giving people who suffer with Long COVID a voice,” she said. “Even if that voice is just writing something down and being able to take it to your doctor.”
Vincent added that documentation can also reassure people that their experiences are real and worthy of attention. “It helps them go, ‘Okay, I’m not crazy. I was actually experiencing this,’” Vincent said.
Representatives continue to play a vital role in RECOVER
This work highlights one of the unique strengths of the RECOVER Initiative: the active participation of its Patient, Caregiver, and Community Representatives. Alongside researchers, clinicians, caregivers, and community advocates, Representatives help ensure that RECOVER activities reflect the needs and priorities of people affected by Long COVID.
By sharing lived experience, identifying unmet needs, and helping create practical tools, Representatives bring perspectives that research alone cannot provide.
“We need to keep talking about it,” Vincent said. “We need to keep people aware that not only are there resources available, but that people like us are working to make sure that people who are dealing with this are heard.”
As RECOVER continues to advance research and deepen understanding of Long COVID, these new resources offer another example of how Representatives are helping translate community needs into meaningful action. Their work is helping people find information, access support, advocate for their health, and navigate daily life with Long COVID.
Explore new resources on the RECOVER Representatives webpage.
