A Self-Advocate’s Guide To Long COVID

Click the blue questions to read the answer. Last Revised: August 2024

  • Long COVID is when you are still having symptoms of COVID for 4 or more weeks after infection.

    It can be new or worse symptoms after a COVID infection. Symptoms can happen off and on.

    You may have higher risk if you are:

    • Not up to date on COVID vaccination

    • Have had multiple COVID infections

    • Immunocompromised or have underlying health conditions

    • Headaches

    • Anxiety, depression and higher suicide risk

    • Dizziness

    • Brain feels foggy, tired, confused, or forgetful

    • Sleep Problems

    • Loss of sense of taste or smell

    • Ringing in ears

    • Sore throat

    • Coughing

    • Whole body feels more tired than usual

    • Having a fast-beating or pounding heart

    • Chest tightness

    • An upset stomach, nausea, or diarrhea

    • Pins and needles feelings

    • Change in menstrual cycle

    • Join and muscle pain

    • Inflammation or a hot feeling

  • There are some options that your doctor or healthcare provider can talk about with you. These options can help make you feel more comfortable.

  • Currently there are not tests for Long COVID.

  • COVID infections put people at more risk for diabetes, heart conditions, and neurological conditions (including Alzheimers.)

  • You can not give Long COVID to other people.

    The best way to protect yourself from Long COVID is to protect yourself from COVID infection.

    COVID is spread in the air whether or not you’re in the room.

    One strategy is to control the air that we breathe.

  • The risk is never zero, but here are some things that you can do to lower your chances of getting COVID:

    • Social distancing

    • Washing your hands using hand sanitizer.

    • Being in fresh air, or in a room with an air purifier.

    • Avoid crowded indoor spaces.

    • Wear a mask when in group settings that are inside.

    For more information on COVID and Long COVID, call 888-677-1199 Monday-Friday 9 a.m. to 8 p.m. ET. This is a COVID Hotline for people with disabilities called The Disability Information and Access Line. Visit https://DIAL.ACL.gov for more information.

Sources:

Click here to download our Long COVID Guide