A Self-Advocate’s Guide To Long Covid

Last Revised: April 2025

IHPP guides are for educational purposes only. The illustrations and information about anatomy are for learning about the human body, health conditions, and preparing for appointments. These guides should not be used to diagnose or treat any health problems. These guides are not a replacement for seeing a licensed medical professional. Please talk with your healthcare provider if you have questions or concerns about your health.

Transcript:

A Self-Advocate’s Guide to Long COVID

Created by the Vermont Developmental Disabilities Council

Some people still have health problems 3 months after recovering from COVID-19. This is called Long COVID.

These symptoms can come and go, be new, or continue from when you were sick.

What is Long COVID?

Long COVID means having health problems long after your COVID infection is over.

What are some signs of Long COVID?

  • Brain fog, confusion, or forgetfulness

  • Headaches

  • Dizziness

  • Feeling very tired

  • Sleep problems

  • Anxiety, depression, or higher suicide risk

  • Chest tightness or trouble breathing

  • Fast or pounding heartbeat

  • Cough or sore throat

  • Upset stomach, nausea, or diarrhea

  • Loss of smell or taste

  • Muscle or joint pain

  • Pins and needles feeling

  • Menstrual changes

  • Ringing in ears

  • Feeling hot or inflamed

Not everyone has the same symptoms.

Are there treatments for Long COVID?

There is no cure yet, but your healthcare provider can help you feel more comfortable.

Are there tests for Long COVID?

No, there are no specific tests for Long COVID.

Can I make other people sick?

No, you cannot spread Long COVID to others. You do not need to isolate.

When will I get better?

Long COVID can last weeks or months. Doctors are still learning about it.

How do I protect myself from Long COVID?

The best way is to avoid getting COVID. You can:

  • Get vaccinated and stay up to date on boosters

  • Wear a mask in crowded places

  • Wash hands and use hand sanitizer

  • Open windows or use air purifiers

Need more info?

Call the Disability Information and Access Line at 888-677-1199 or visit: https://DIAL.ACL.gov

What is The Inclusive Healthcare Partnership Project (IHPP)?

IHPP helps everyone have the tools they need to support their health.

IHPP Goals:

  1. Make plain language health info by and for people with developmental disabilities

  2. Help healthcare providers work better with neurodiverse patients

Last revised: January 2025
Learn more: http://www.ihppvt.org

Supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS), Award: $95,319.

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