How to effectively talk to your local provider about long COVID

With so much still unknown about Post COVID Syndrome (PCS), finding treatment can be very challenging and frustrating for patients. Many providers have limited experience with this new condition. Specialized Post COVID Clinics have more demand than appointments available, long wait times and limited access.

 It's important that patients start care as soon as possible close to home with their local provider. At Mayo Clinic's COVID Activity Rehabilitation Program (CARP), we have seen that earlier treatment for PCS leads to better outcomes, like faster and more complete recovery. To help make your next trip to the local clinic successful, here are four tips to try.

Focus on individual symptoms, not PCS.

Many providers have not been trained on how to evaluate and treat PCS. Secondary to this, just mentioning “long haul covid” can result in fear and even stigma when it comes to medical care. That is why I recommend focusing your care on the treatment of your symptoms, rather than PCS. The unique part of treating PCS mainly involves the recommendations for low intensity activity with slow increases. Otherwise, the treatment of symptoms in PCS is the same as if someone never had COVID. For example, if you are experiencing headaches with PCS, providers should evaluate and treat the headaches like any other headache. Focusing your concerns on your symptoms, versus “I need help with long haul covid” will help minimize barriers and unintentional bias.

Prioritize your concerns.

PCS can result in many symptoms. Evaluating numerous symptoms safely and thoroughly takes a very long time. At Mayo Clinic, our Covid Activity Rehabilitation Program (CARP) appointments are 1 hour long. However, primary care providers do not have this time luxury, with visits often lasting 15 minutes at most. To get effective care in such a short time, I recommend tackling your symptoms in groups, based on importance to you. For example, if you have many symptoms, but fatigue, headaches, and troubles sleeping bother you the most, focus your discussion on these first. Of course, all your symptoms are important and should be addressed. To help set the stage for prioritized care, try saying the following to you provider:

“I am having quite a few symptoms after my COVID infection. I know we have limited time, so I wanted to start with the three symptoms that most concerning to me today.”

By following this strategy, you will have time within each visit to discuss evaluation and treatment effectively.

Create and share realistic treatment goals.

A question I almost always ask my patients is “what is your goal for treatment.” It may seem like a trick question, but it is very important to know what a patient’s expectations are for their care. For example, goals like “I don’t want to be tired anymore” or “I want to get rid of my headaches” is very vague. Everyone gets tired from time to time. Such nebulous objectives make seeing improvements very difficult. Instead, think of specific goals focused on function. Examples of good goals are “I want to be able to walk my dog for 1 mile” or “I’d like to get back to work full time.” And don’t forget to clearly share your goals with your provider. This will help you both develop a more specific and effective treatment plan.

Develop a partnership.

Patients will often say to me “I'm sorry, but I looked up a couple of things on the internet.” First, take it from me that you should never feel the need to apologize for being your own advocate. Dr. Google is a wonderful colleague of mine. Second, with so much left to be discovered about PCS, providers need all the help they can get. The patient-provider relationship is a two-way street, and I have found out about some interesting theories and treatments through my patients. So don’t be afraid to ask about a medication you may have heard about. Or that you read on the awesome Mayo Clinic blog that treatment for PCS symptoms is essentially the same as if someone never had COVID. Of course, providers can’t just order anything you ask for, but you will never know if a treatment is possible unless you ask.

Just as interviewing a patient is an art, so too is speaking to medical providers. With these tips, you can help eliminate unnecessary barriers to care and get your treatment started as soon as possible.

Read more about managing symptoms such as loss of smell or taste. Connect with other people like you and share your recovery tips and successes in the Post-COVID Recovery & COVID-19 support group.