Caring for People with Long COVID

Note that Long COVID is referred to by a wide range of names, including:

• Post-COVID conditions
• Post-acute COVID-19
• Long-term effects of COVID
• Post-acute COVID syndrome
• Chronic COVID
• Long-haul COVID
• Late sequelae
• Post-acute sequelae of SARS-CoV-2 infection (PASC)

For purposes of this discussion, we use “Long COVID”.

Having Long COVID or supporting someone with Long COVID can be challenging. It can be difficult to care for a loved one with Long COVID, especially when there are few or no immediate answers or solutions available yet. However, there are ways to help relieve some of the burden of caring for someone with a new and unknown condition.

Caring for Adults with Long COVID

Experiencing Long COVID can be confusing and frustrating. If you know or care for someone with Long COVID, you know they may be feeling isolated, depressed, and even angry.

People experience Long COVID in different ways and may want different types of support or even no support at all. To determine the most helpful steps you can take to help someone with Long COVID, first listen with compassion and ask questions about what they need.

CDC’s How Right Now campaign provides helpful tools for navigating conversations about the types of support someone with Long COVID may need.

See Guidance on “Long COVID” as a Disability Under the ADA, Section | HHS.gov

In the meantime, know that scientists from many public health and research agencies around the world are hard at work studying this illness, especially among those with a lived experience of Long COVID. Many of these scientists are working hard to determine which types of medications or treatments can help to relieve some of the worst effects of Long COVID. We are working to have more answers quickly.

If you care for someone with Long COVID, remember to take steps to protect yourself and others from COVID-19.

Caring for Children or Adolescents with Long COVID

Although Long COVID appears to be less common in children and adolescents than in adults, long-term effects after COVID-19 do occur in children and adolescents. Young children may have trouble describing the problems they are experiencing.

If your child has Long COVID and it impacts their ability to attend school, complete schoolwork, or perform their usual activities, it may be helpful to discuss possible accommodations with your child’s healthcare provider and school. Such accommodations may include extra time on tests, scheduled rest periods throughout the day, a modified class schedule, and others. School administrators, school counselors, and school nurses can work with families and healthcare professionals to provide learning accommodations for children with Long COVID, particularly those experiencing thinking, concentrating, or physical difficulties. You may also request similar accommodations for activities outside of school, such as day care, tutoring, sports, scouting, etc.

For more information, visit the U.S. Department of Education’s Office for Civil Rights (OCR) and the Office of Special Education and Rehabilitative Services (OSERS)’s Resource to Support Children, Students, Educators, Schools, Service Providers, and Families [PDF, 237KB, 10 pages].

Other Ways to Help

There are different ways to manage the stress, anxiety, and uncertainty of a new illness. Some people find that taking an active role in understanding this condition can be a comfort for managing an ongoing illness. Both caregivers and those suffering from Long COVID may benefit from engaging in one of the following activities.

• Read about the experiences of other people with Long COVID.
  Understanding other people’s experiences with Long COVID and reflecting on how these experiences may be similar or different than your own can help confirm you are not alone.
• Contribute to ongoing scientific research.
  Participating in research studies can build a larger understanding of new and unknown illnesses. Information about enrolling in clinical trials related to COVID-19 can be found at COVID-19 Treatment Information for Patients, and includes opportunities for persons with and without COVID-19. The National Institutes of Health (NIH) is conducting a research project called the RECOVER Initiative to understand how people recover from a COVID-19 infection and why some people do not fully recover and develop Long COVID. Learn more about Researching COVID to Enhance Recovery.

The Importance of Self-Care for Caregivers

Here are some steps you can do to help manage and cope with stress:

• Take care of your body.
  • Take deep breaths, stretch, meditate, or practice mindfulness.
  • Try to eat healthy, well-balanced meals.
  • Exercise, if you can. Listen to signs from your body.
  • Get plenty of sleep.
  • Avoid alcohol and drugs.
  • Spend time in nature. It has been shown to improve mental health.
• Make time to unwind. If you feel able to, try to do some activities you enjoy.
• Connect with others. Talk with people you trust about your concerns and how you are feeling.
• Take breaks from watching, reading, or listening to news stories, including social media. Hearing about the COVID-19 pandemic repeatedly can be upsetting.

For information, explore CDC’s recommendations on how to cope with a disaster or traumatic event.

If any of these steps require changes to your routine, diet, activity level, or medication, talk to your healthcare provider.

If you are a caregiver, remember that maintaining healthy behaviors and seeking additional support is an important part of helping other people.