This page addresses how to find support and information after a long COVID diagnosis via the following sections:
Long COVID can affect many aspects of your life, including employment, finances, relationships and your ability to perform normal activities of daily living. There are community-based programs that may be able to help you meet these needs.
- NH 211 is a community resource information service for New Hampshire residents. These offerings are also accessible by dialing 2-1-1 or 866-444-4211.
- Vermont 211, like its New Hampshire-based counterpart, is a community resource information service. It provides Vermont residents access to local offerings via its website and phone line (by dialing 2-1-1).
- Via Dartmouth Health's community resources directory, patients can find local resources, facilities and organizations in Vermont and New Hampshire. This directory covers everything from home care to financial assistance.
- Vermont Care Partners is a network of agencies in Vermont that specialize in mental health, substance abuse and child and family support. Several agencies are hubs for partnerships in the communities they serve. One of their projects is COVID Support VT, a non-profit organization that helps Vermonters connect to community services, such as:
- Parent and caregiver resources
- Stress management
- Healing Whole is a blog authored by Vermonter Margo Caulfield. It highlights ways sufferers of chronic conditions can thrive. Topics include:
- Finding community services and support for long COVID
- Managing health information
- Creative ways to recharge
Work and disability
Some people who contract COVID-19 have persistent symptoms or develop new symptoms. The symptoms of long COVID vary and can be severe enough to hinder a person’s ability to complete everyday tasks. According to the US Department of Health and Human Services (HHS), a person with long COVID has a disability if their “condition or any of the symptoms is a physical or mental impairment that substantially limits one or more major life activities.” When long COVID qualifies as a disability under federal laws, individuals are eligible for reasonable accommodations.
If you are an employee with a disability due to long COVID, you may be able to take leave under the Family and Medical Leave Act (FMLA). Eligible employees can take up to 12 weeks a year of unpaid, job-protected leave for certain qualifying reasons.
Below are a number of national and regional resources. These can guide and educate you on your rights and how to navigate meeting work-related needs.
Services and Supports for Longer-Term Impacts of COVID-19 (PDF) outlines available resources across federal agencies. It is a detailed 124-page document. Pages 17 and 28 through 71 offer information about your rights, financial and job assistance, and caregiving and family support for individuals with long COVID. It is also a resource for health care personnel who work with and treat them.
Created in collaboration with the US Department of Justice, this document provides Guidance on “Long COVID” as a Disability Under the ADA (Americans with Disabilities Act).
From the US Department of Labor's Office of Disability Employment Policy comes long COVID support resources. Information specific to workers, employers, youth, young adults and policymakers is available here.
The Job Accommodation Network (JAN) website provides a list of resources as well as contact information for negotiating workplace accommodations if you are disabled.
The Administration for Community Living's Resources for People with Long COVID page explains and provides links to a variety of programs and services. Community-based resource guides are also available. Community-based resource guides (PDF) are also available.
Understanding Disability and long COVID. This 1-hour presentation from Project ECHO’s Long COVID & Fatiguing Illness Recovery Program outlines the basics of long COVID disability. It is aimed at community providers.
The Disability Rights Centers of New Hampshire and Vermont are statewide organizations. They provide information, referrals, advice, and advocacy to individuals with disabilities.
The NH Governor’s Commission on Disability outlines disability services. This includes inquiries about ADA assistance (PDF) within the state of New Hampshire.
From the State of Vermont Department of Labor, VT RETAIN (Retaining Employment After Injury/Illness Network) guides people living or working in Vermont who are at risk of work-disability.
Learning and connecting
Long COVID is a new condition that affects people differently. As a result, other people might not know what help you need. The more you understand about long COVID, the better you can advocate for yourself. You also might find it easier to explain your needs to family, peers and providers. The following materials and organizations provide a well-rounded view into long COVID and its impact:
- Our long COVID provider resources page highlights education materials and training programs. While many of these resources target health professionals, they offer complete information about long COVID that is also useful for patients. Featured resources include:
- The long COVID and Fatiguing Illness Recovery Program
- Their session, Patient Perspective: Understanding what Isn’t Understood (June 2022) features multiple viewpoints that may resonate with you.
- The National Institute of Health
- The Centers for Disease Control and Prevention
- The long COVID and Fatiguing Illness Recovery Program
- Survivor Corps has informed and supported long COVID patients since the start of the pandemic. It is a grassroots organization that educates, collaborates with and mobilizes both patients and providers. Survivor Corps works to broaden research and develop pathways to care. Their site offers:
- Links to research studies
- Long COVID news
- Tool kits
- The long COVID Podcast originates in the UK and is by and for people living with long COVID. It offers:
- Audible episodes covering subjects ranging from research to treatment to personal stories.
- Links to other resources via its website, such as a long COVID Choir and support groups.
- Long Haul Voices, created by SolveM.E., is a mini-series. Personal stories amplify the experiences of individuals with long COVID and ME/CFS (chronic fatigue syndrome). It also tackles the challenges surrounding these largely invisible, poorly understood diseases affecting a rapidly growing population.
A social network can help you feel less alone, validate your experiences and connect you with others who are facing similar issues. This can be especially important for those living in isolation or in rural areas. Through others, you may learn and share important skills, strategies and information relating to long COVID.
The PACS Clinic is conducting several virtual long COVID facilitated peer support groups. These groups are open to anyone previously seen in the clinic.
PACS facilitated peer support groups
- The long COVID peer support group is for people with long COVID who want to share their experiences and feelings, access information from others and find a community of peers to share support. The monthly, 75-minute sessions are held virtually. The schedule varies.
- The long COVID creative writing program is open to anyone who enjoys reading or writing and wants to share their COVID journey. No writing experience is required. The 75-minute virtual sessions take place over a 4-week period and are led by an experienced writing instructor. This program is aimed at individuals with long COVID who would like to:
- Learn ways to process experiences through writing
- Improve coping strategies
- Find a community of peers to share support
If you have visited the PACS Clinic and want to join or have questions about either of the support offerings, please email firstname.lastname@example.org.
Other support groups
Body Politic is a global peer network for people affected by COVID-19. It promotes patient-led research and shares news and resources. Their patient resource section offers videos, webinars and articles. Topics include exercise, dysautonomia and disability, as well as emotional and peer support.
- The Dartmouth Health Creative Arts Program offers visual, literary and music programming to patients and caregivers. Many of their programs are virtual.
- Their events calendar includes ongoing arts and culture events offered in collaboration with regional resource and support programs.
- Their Facebook group is a private forum for patients, artists, musicians and the larger arts-in-health community. Join the group to access free programs including Writing Wednesdays, a prompted and recurring writing activity.
- The Creative Center, in partnership with the PACS Clinic, provides free virtual arts programming to patients, caregivers and healthcare staff. This includes:
- On-demand instructional art videos including watercolor, movement and poetry workshops available via YouTube.
- Live virtual programs available to PACS Clinic patients. If you have been seen in the clinic and are interested in joining one of their live sessions, please email email@example.com.