How to talk to healthcare providers about Long COVID

from LONG COVID ESSENTIALS
a resources series by The Sick Times x Long COVID Justice

Talking to healthcare providers


If you suspect that symptoms you’re experiencing could be related to Long COVID, here are some tips on how to navigate it within the medical system.

Starting the conversation

  • Ask the provider about their existing knowledge or understanding of Long COVID. Do they understand the seriousness? Have they worked with patients with similar experiences before?
  • Assess whether they are empathetic and listen to you as an expert of your own experience. Do they seem willing to listen to you and trust your expertise?
  • Start by listing symptoms, starting with two or three that have the most impact on your day-to-day life. Bring your symptom journal or tracker so you can share how symptoms are impacting you.
  • You can provide studies or any affirming evidence you’ve collected, including fact sheets from this resource series. However, it can be good to limit the amount of information you are offering, in order to not overwhelm the provider or use up too much time. Some providers may be resistant to outside information.
  • If your primary care provider isn’t helpful and you have concerning symptoms, consider finding a specialist or going to a Long COVID clinic.

How to support someone else at the doctor

  • If you yourself are not experiencing symptoms related to Long COVID but wish to be a Long COVID advocate for someone, you can accompany them. People with Long COVID can also advocate for each other, if they have the energy and do not find it overwhelming.
  • Advocates can help prepare for the appointment, provide transportation, witness the experience, vouch for their symptoms, help them document the appointment, and put pressure on providers to give care and take the patient seriously.

Medical gaslighting

Medical gaslighting is when healthcare providers try to convince someone they’re wrong about their own body or experience. It’s most likely to happen to those most vulnerable to medical bias, including women, BIPOC, queer and trans people. It has been common among people experiencing Long COVID symptoms.

  • Medical gaslighting can look like:
    • A provider minimizing or dismissing symptoms; 
    • A provider refusing to order tests or refer you to a specialist;
    • A provider claiming your symptoms are “anxiety” or stress.
  • If you’re experiencing medical gaslighting, you don’t have to accept it. You can get a patient advocate to come with you or call healthcare providers on your behalf. And you can seek a second, third, or fourth opinion from other providers.
  • You are also legally allowed to record your appointment. A free app like Otter.ai can make a recording and transcript at the same time, using your smartphone.
  • Long COVID specialist Dr. David Putrino offers questions you can ask and actions you can take if you experience medical gaslighting in this video (start at 56 mins).

If you need to seek help for the mental and emotional impact of medical trauma or gaslighting, here’s a list of COVID-Conscious/affirming therapists. 

Where to go if a provider doesn’t help

See our resource on where to get help for Long COVID.

Resources

Writer: Elly Belle • Editor: Betsy Ladyzhets • Medical reviewer: Dr. Michelle Haddad

Printable version of this resource page

Additional resources & info

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Notes

  • This series was published in fall 2024; some information may be subject to change.
  • Although each topic has been reviewed by medical professionals, they are informational resources, not medical advice. Always talk to your medical providers before trying treatments or symptom management strategies. 
  • Each resource page offers brief information and is not comprehensive. We know there is much more information on each topic we cover, and that there are additional topics not yet addressed in this series.