Talking to your healthcare provider if you think you have Long COVID

If you are continuing to not feel well after having COVID, it may be time to contact your healthcare provider to determine whether or not you have “Long COVID.” Symptoms of Long COVID can include being excessively tired, headaches, persistent cough, abnormal taste and smell, brain fog, as well as other nonspecific symptoms.

While the formal definition and timeline of Long COVID varies per the CDC and WHO, it generally refers to having symptoms more than two months after an initial infection from COVID. This can be seen in individuals who did not have many symptoms of COVID, were not hospitalized, or were hospitalized. Long COVID can also occur in both children and adults.

As a first step, make an appointment with your primary care provider. Your provider will be able to evaluate you and determine if any testing or treatments are needed. In some situations, your primary care provider may refer you to a specialist for further evaluation. There may also be specific programs and clinics for individuals with Long COVID in your area. A listing of Long COVID specialty centers can be found here. 

There are now several support networks for Long COVID that are available, which can help connect you with other resources for individuals with this condition. 

At these appointments, it may be in your best interest to prepare. This could include:

1. Organizing medical records, such as your vaccination card, positive PCR or antibody test date, or medicines you routinely take.
2. Writing down a list of your symptoms, and especially identifying the top 3 most prominent symptoms you are experiencing.
3. Jotting down any questions you have about Long COVID or your symptoms so that you do not forget at your appointment.
4. Bringing an advocate – someone who knows you or your medical history well – with you to your appointment to provide support and increase your comfort within a healthcare setting.
5. Arriving early for your appointment, in case you need to fill out any extra paperwork.

Your provider is likely to ask you about your experience with Long COVID, and it is important to provide as much information as possible to help your physician pinpoint the best way forward to improve your condition. These questions could include:

1. When you were infected with COVID, and when your symptoms started becoming worse.
2. Which symptoms have been causing you the most difficulty in your day-to-day routine.
3. If you have attempted to treat these symptoms, and whether those treatments have or have not been successful.
4. How physical activity affects your symptoms.
5. If you have any history of medical issues within your family.
6. If you have any prior history with these symptoms from a separate condition.

Once you have discussed your symptoms with your provider, it is possible that they will not have all the answers. Understandably, this is frustrating, but keep in mind that Long COVID is still a new and very complex disorder. It is likely your doctor, or other healthcare provider, along with you and your advocate, will become a team with other specialists. At this point, it is imperative that you write down and follow up with your appointments, tests, or prescribed medications. Direct any questions to your health care providers or specialists, rather than the internet. Make sure you touch base with your team as your symptoms progress to ensure they begin to improve as quickly as possible.