Dr. Archelle Georgiou, collaborator Caring Bridges Series says long COVID is symptoms of COVID-19 that persists beyond four weeks after the initial infection. She says 10% - 30% of people who have COVID develop long COVID symptoms.
Some of the symptoms of long COVID are cough, shortness of breath, joint pain, chest pain, a brain fog that makes it difficult to concentrate but there can be over 200 symptoms that people can have with long COVID. Dr. Georgiou says they vary from patient to patient and they can even vary within the same patient from day to day, so it is like an unpredictable roller coaster ride.
What do you do if you think you have this? Dr. Georgiou says there are two things you should be thinking about. Number one: if you have any symptoms that you may believe is long COVID, your symptoms are real and not imagined. Don’t brush it off. Make sure you see your doctor, talk to your doctor. She says there may be interventions that could improve how you are feeling or there may another underlying, unrelated problem that may need to be addressed.
Number two: make sure you understand that if you’re getting brushed off, there are a lot of doctors that are uncomfortable with long haul COVID symptoms and may be thinking it is all in your head. If you are not getting the care that you feel you need or you’re not getting better there are long COVID specialty clinics across the country that might be important for you to tap into to get the care that you need.
Finally, Dr. Georgiou says it’s really important that besides the medical care, what you need to surround yourself with supportive care, with family and friends and a support system because no one should be through a health journey, an experience like this themselves.
For 24 years Caring Bridge has been a safe digital space online to help people who are experiencing any type of health journey in a private way with family and friends. With COVID19 Caring Bridge has recognized that it is important to offer this type of support to individuals with Long COVID so they created a COVID19, Long COVID specific place within Caring Bridge. Dr. Georgiou says what people can do is get the latest research on COVID; they can link to these specialty clinics that have been developed across the country. They can complete a survey about their long COVID symptoms, and she says she really hopes people do that because people can contribute to the research and the knowledge and help others by sharing their symptoms with them. They will anonymize your results but will share the aggregate results publicly and people can start a Caring Bridge page so that they can inform their family and friends the people who love them about what they are going through. She says family and friends want to help they just need to know how. In addition to having your family and friends around you, you can link to support communities for Long COVID. Dr. Georgiou says there are thousands of people around the world who are communicating with each other about their symptoms, what works, what doesn’t work. All of these resources are on the on the Caringbridge.org/covid page.
